Bleeding Disorders

Infused With Music: Dave Colvin

By Shelby Smoak

After over 30 years earning a living as a numbers guy and working in accounting positions while trying to perform and write songs in the off hours, Dave Colvin, a man with hemophilia A, finally shed that day-to-day job and traded it to focus on his real passion—music.

It was a career move he had put on hold since his college days when he started Illinois State as a music major, but changed because of state funding and the increased availability of jobs in accounting and cash management. But in 2006, Dave started his own publishing company, Arnybarn Music (BMI), and began professionally recording his songs and pitching them to other artists and labels, and he hasn’t looked back since.

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Dave’s big break came in 2011 when one of his songs, “Gently Falls,” was selected for use in an episode of CBS’s Star Trek: Enterprise. The song aired in Season 2’s second episode, “Carbon Copy,” and can now be streamed on Netflix, CBS All Access, Hulu, and Amazon. Catch Dave’s song in the background at around the 10 minute mark. For Dave, it is an exciting time and a validation of his music. “It is so amazing to think that each month thousands of people around the world hear my voice and my song!” he enthuses. “My quarterly royalty report shows some 15,000 to 25,000 views per website!”

The success continued when another song “You are Living On” was released by Ronan Parke who was runner up on the 2011 season of Britain’s Got Talent. While Ronan Parke’s version differs from the country-infused, laid-back delivery of Dave’s own performances, the emotional tug of the song gets lifted into a pop gem.

The song was born from Dave’s grief at losing his parents within a few months of each other:

Just the other evening

We were talking on the phone.

Your advice was sure and steady

But your voice was not as strong.

Now that body’s finally failed you,

Heaven’s called you to come home.

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It is at once specific, opening with a clear scene anybody can relate to, yet Dave consciously avoids a strict script after that, assuring that the lines will resonate with just about any listener. “To be successful, one needs to be able to write something that will be universally felt or understood,” he says, the philosophy that likely garnered this song as a hit. “It has been humbling to see the comments [Ronan Parke] fans have posted about how my song has touched their hearts,” Dave says. “It makes the years of trying and getting rejected time and again, all the more worth it!”

Those years, of course, came with the normal obstacles artists face and then the not-so-normal trials of having a bleeding disorder.

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“Prior to prophylaxis,” Dave says, “I would often get a bleed from performing, usually an elbow from playing the guitar.” In those early years, he remembers going to the hospital for cryoprecipitate before his band performed. Dave continued infusing and performing, especially at a yearly festival in his hometown of Decatur, Georgia. About a decade ago, he had to let the touring go. Things came to a head at one show where Dave tripped on the stage’s drum riser and broke his elbow. “As I age, I do not perform out much anymore simply because it has gotten difficult to even go up a few stairs to get on stage,” he says. “The past few years I mostly record from my home studio in Nashville.”

Full of wisdom and advice, Dave advocates that to be successful in music, three ingredients are required: a love of music, patience and a thick skin, all things he owns in spades. Dave spends his other time as a father and grandfather and is thankful for singing through over forty years of marriage. He’s also working on an autobiography but says he’s only up to 1994 in the yearly chronicle.

While waiting for that, you can enjoy Dave Colvin’s music now at: https://www.arnybarnmusicgroup.com/music

Infused With Music: Emily Champagne

By Shelby Smoak

After attending an orchestra concert in elementary school, Emily Champagne, who has von Willebrand Disease, knew she wanted to play the violin. For the twelve years since that first concert, she has done so and has made it her dream pursuit.

At 23, Emily’s life is taking off. She is recently married, spends quality time with family and friends, enjoys reading and playing video games and holds down a steady job as a grocery cashier. But she pines for her musical break. “I hope to one day get a job as a professional violinist in an orchestra,” she says.

Emily has performed in a plethora of string quartets and chamber orchestras, including the Suncoast Super Strings, conducted by violin virtuoso Itzhak Perlman, who has been the equivalent of a rock star to Emily. “Growing up, I always would listen to the music of Itzhak Perlman,” she states with excitement. “He is an extremely talented violinist, and someone I really look up to!”

When Emily got to perform in a concerto under Perlman’s direction, she was “beyond excited.”

She says, “To be able to perform in front of my violin idol was a huge deal,” and adds, “When I got the phone call stating I was accepted into the program, I remember crying out of happiness. It was such a once-in-a-lifetime experience to be able to work with a world-renowned violinist.”

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She has also traveled to Europe with the local youth orchestra and performed in Salzburg, Vienna, Prague and Munich. During high school and community college, Emily served as concertmaster and was appointed co-concertmaster of the University of Central Florida (UCF) symphony orchestra for the 2018-2019 school year.

If you ask Emily about her bleeding disorder, she indicates that it isn’t slowing her down. “VWD hasn’t really affected my music,” she says. “It’s an activity I know I can enjoy without having to worry about my bleeding disorder.” Music helps her escape the challenges of her bleeding disorder.“ To her, it offers a form of expression she can’t find in other places. “You can compose songs that show how you feel, or simply play music to get your mind off of things,” she says.”

Having just graduated with her Bachelor of Music in Violin Performance from UCF in May of this year, Emily’s dream is to now perform in chamber groups and a professional symphony orchestra.

Violin has been a constant in her life and is even something she can lean into if she is having medical issues. So, while Emily may not have everything figured out yet, she is certain about violin: “One thing for sure is I know I’m going to keep playing violin!”

Infused With Music: Maxwell Feinstein

By Shelby Smoak

When I get Maxwell Feinstein on the phone for our interview he is walking the streets of New Jersey on his way to Silver Horse Sound, the recording studio where Maxwell can be found tracking his own music, streaming live music posts on Facebook, or working with other artists who have booked time with him.

Today he has two rehearsals, a bass tracking session, and a mix session. “Tomorrow sees us doing two more recording sessions unrelated to the session previously mentioned and I’ll be meeting with a potential songwriting partner for some children’s music,” he adds. In a world where earning your keep with music has become an almost impossible task, Maxwell, a person with hemophilia, is able to keep things moving.

Maxwell got his first guitar at age eleven inspired by Nirvana’s “Smells Like Teen Spirit,” and the “teen spirit” to play music struck hard. “I had been participating mostly in choirs or theater before this,” he says, “with brief flirtations (weeks of interest at most) on violin, flute, clarinet and saxophone.” But once Maxwell found the guitar, he took school hours to steal away into an unused handicapped bathroom which he transformed into his band room. “People used to use that space as a make-out room,” he says, “and I would just sit there practicing.” Maxwell adds, “If you wanted to get some necking in, you’d have to put up with me practicing” because nothing was getting between him and his guitar.

Now, in addition to running a studio, Maxwell dons a guitar or bass—depending on the need—in a bevy of touring bands: Jaime Della Fave (Jaimerosey), BWQ (or Project BWQ), Terra Electric, The Love Network and Debra Devi.

“My policy is basically that I’ll perform with anyone who asks!” he enthuses. He also writes, performs and records his own music, some of which can be heard on his solo release Round of Sound. In talking about Round of Sound, Maxwell calls it a labor of love with himself and other friends who helped him complete it. “I played most of the instruments save for the drums, and we did it in our rehearsal room just stringing microphones up and grabbing the sounds 60’s style with little regard for sounds bleeding onto the tracks.”

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Stand-out track “Mad Dog’s Promenade”, released in 2012, highlights Maxwell’s whimsical style with its off-the-cuff lyrical refrain, “Smile to myself as I walk.” “It’s a song about walking around town, going about my business while musing on how good I have it if I get to go make music when I’m done walking around,” he says of the track. But not all his songs are easy-going tunes. “I’ve written about coping with those I’ve lost,” he reflects, “and I’ve written about loves current and past. I’ll often write about whatever’s interesting to me at any given time.”

And then there is Maxwell’s hemophilia, which, as he says, “visits me when it wants.”

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He has lost cartilage in his elbows; played shows with ankle bleeds, knee bleeds and elbow bleeds; dealt with nose bleeds while on tour. “I had a nosebleed from two days before we left on a tour until the last tour day two weeks later,” he says. But it hasn’t stopped him. He takes care of his hemophilia so music can take care of him.

Before ending our interview, Maxwell offers this advice, culled from his own experiences: “Try your best to figure out what makes you happy and what builds community around you and how you can make it grow into something you can be proud of toiling for.” Maxwell has done just that.

Maxwell Feinstein’s music can be found at: http://www.maxfeinstein.com

Infused With Music: Wayne Cook

By Shelby Smoak

With over 40 years of playing music, nobody is more comfortable behind the kit than Wayne Cook. His is a steady rhythm. And his instrument of choice is uncannily fitting as Wayne is the backbone for so much more than songs.

For starters, Wayne, a person with severe hemophilia B, is the current president of The Coalition for Hemophilia B. For another, Wayne is the father of four grown kids and the proud grandfather of three more. Those are a lot of big roles to fill.

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Wayne began playing music in 4th grade and through school beat his drums in marching band, jazz band, summer camps and band competitions, winning the New York State Class divisions for marching and jazz bands in the late 1970s. A fond memory from this time was when his school won their state championship and the jazz band burst into the Rocky theme song with Wayne pounding out a double drum solo. “In all the places I have ever played, it will never be as rewarding as playing that event because that truly sealed it for me as a drummer,” he says. At home, he listened to the greats: John Bonham in Led Zeppelin, Ringo Starr in the Beatles, and one of his favorites, Neil Peart in Rush.

“I loved listening to these guys,” Wayne says, “because they could put down great thunderous beats or smooth grooves to some of the greatest songs.”

But life got in the way after school and the drums went silent. That is until nine years ago when Wayne dusted off the skins and began sitting in for cover, tribute, studio and original bands.

More recently, Wayne jumpstarted The Bleeders cover band, a group that includes myself and other persons with bleeding disorders as its core: Phil Hardt, Rick Starks, Kevin Harris. “For years,” Wayne says, “I had this dream about putting together a band with people from the hemophilia community.” The Bleeders just wrapped up a 2-night show at The Coalition’s Annual Symposium, but Wayne’s long-term goal for the project is to perform at other hemophilia events and even work toward a recording.

In talking with Wayne, he admits that hemophilia has had its impact on his playing. Two replaced knees and arthritis settling in his hands and legs have kept him from playing as fast as he once could. “Now, I am more about keeping a good steady beat and good grooves,” he says, adding that “playing drums three to four times a week for a few hours at a time has helped me with my joints.” Ultimately, Wayne says he will continue playing and “keep that cool groove” and will always be a “Rocker.” You can catch Wayne playing near his hometown in upstate New York and at The Coalition for Hemophilia B Music Camp in Nashville this summer.

Wayne can be heard drumming in The Bleeders live recordings, available on Bandcamp: https://thebleedersusa.bandcamp.com/

Infused With Music: Katyrien Hall

By Shelby Smoak

As budding musical songbird Katyrien Hall and almost anyone will tell you, “Bleeding disorders aren’t contagious,” but Kaytrien’s enthusiasm and passion for musical theater is.

Only in her freshman year of high school in the remote calm of Maine, she already has a pedigree of performances and a talent to match. “I’ve always enjoyed playing instruments and singing when I was younger,” she says, and after doing her first musical Dear Edwina Jr. in 7th grade, followed by another role in The Wizard of Oz, Kaytrien was hooked. She describes her next achievement playing the lead role Belle in Beauty and the Beast as “one of the greatest experiences of my whole musical journey so far.” She adds, “It made me fall in love with the whole idea of musical theater.”

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One thing that made musical theater especially attractive to Kaytrien is that it was a “much safer place” for her than any other hobby. Kaytrien suffers from von Willebrand disease and platelet impairment and has two siblings with a bleeding disorder. While she participated in volleyball thinking it a safe “non-contact sport,” she still developed bruises and damaged her arms, leading her hematologist to recommend she quit. Luckily, musical theater was there to catch her, but it’s not all safe. “If I am in a scene where someone needs to grab me or do anything aggressive towards me,” she says, “I have to let the bruises come because it’s part of the show. It is hard having to do a scene like that over and over, but I make sure to take care of myself and keep an ice pack on my bruises.”

Let’s hope then her latest role in Hemophilia: The Musical didn’t give her any bruises. When she heard about the opportunity in 2018, Kaytrien filmed almost 100 takes of her audition video before feeling satisfied enough to send it along to Breaking Through, the group coordinating the awareness-raising event. Backed by funding from BioMarin, Hemophilia: The Musical was a work in art therapy meant to bring teenagers together to share their stories with each other as well as with a larger audience.

For her part in the musical, Kaytrien played a young girl afraid of bullying because of her bleeding disorder.

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“She is shy and doesn’t want anybody to know about her disorder, Kaytrien says of the part, “but she eventually overcomes the fear and shares her story with others.” Certainly, the musical’s message is one many in our community can relate to.

Now back at home, Kaytrien is practicing alto sax, performing in chorus and jazz band and taking a class in musical theory and composition. She labels the ability to perform “so satisfying” and “one of the greatest accomplishments anybody can have.” If you have a bleeding disorder, Kaytrien advocates, “Don’t let it hold you back. Even if you have to do things a bit different from others, try your hardest to do what you enjoy and be proud of it.” True to form, nothing seems to be holding Kaytrien back. “Music has helped me through every rough situation I have been in,” she says. “When I am 20, 30, or even 85,” she adds, “I intend to keep music in my life forever.”

To watch the performance of Hemophilia: The Musical, visit: https://www.youtube.com/watch?v=dGWqxEalxKQ

Infused With Music: Shawn Decker

By Shelby Smoak

When Shawn Decker finally finds some time in his busy life to chat, it is the Monday after the wildly fun 80’s Prom Dance Party event he organizes and performs at in his hometown of Charlottesville, Virginia.

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Not unsurprisingly, this 40-something hemophiliac is suffering from an ankle bleed, the battle wounds of being married to music. “I can deal with this,” he says, because ultimately for Shawn music is beneficial. It heals and “brings you peace of mind and calms you down.”

Shawn is perhaps more widely known through his bizarrely funny memoir My Pet Virus wherein cutting humor he adopts his HIV—a result of tainted plasma products—as a pseudo-pet and narrates how to move forward in life and not dwell on the past. It also is a sort-of love story where his future wife Gwenn plays a central role. Additionally, Shawn is a contributor to POZ magazine where he continues to be a vessel of humorous support to the HIV community.

But Shawn is also a musician. When he was a kid, he fell in love with 80’s synth-pop bands like Pet Shop Boys, Eurythmics, A-ha, and especially Depeche Mode who Shawn got to meet as part of the Make-a-Wish Foundation. Since then, Shawn has channeled that passion into cover songs and original music which he files under his band name Synthetic Division.

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The humor that infused My Pet Virus is making its way into his music. Take for example the morbidly funny “I Wanna Be Cremated,” Synthetic Division’s spin on a classic Ramones song: “Twenty, twenty-four hours to go / I wanna be cremated / Just put me in the fire / turn me into smoke / you don’t have to worry / for once I will not choke.” Who wouldn’t die laughing at that? (Two can play at this morbid humor game, Shawn)

This kind of humor wasn’t always the case with Synthetic Division, a band that is now approaching its 20-year anniversary. An early track “Borrowed Time” from the album Bleeding Heart Cadaver darkly asks, “Am I on borrowed time, do I have much time left? / Is it not sinking in that I am checking out.” On their debut album, Tainted Goods, Shawn croons in “The Rain,” “Fade away / Fade away / Who’s going to fade just like the rain?” Even Shawn admits his music is taking a turn and is now more optimistic. “I feel I got the dark stuff out early,” he says, “and have started letting the lighter side come in,” adding, “I’m not afraid to sound cheesy.”

In talking with Shawn, he continuously reaffirms the importance of music in his life and its ability to create a continuous “safe space” which contributes to better moods and a general feeling of fulfillment.

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He equates writing songs to going back to being a 13-year-old kid in his bedroom, “listening to music, getting my mind back on track, and getting away from HIV.” In contrast to his more lighthearted and less serious approach to music, Shawn is taking his health more seriously. For most of his adulthood, he didn’t have many bleeds, but in the last decade this has changed, and more bleeds equal more treatment center visits for his necessary infusions.

So finally, Shawn “took matters into his own hands” (literally) and began self-infusing. He is also embracing care for his mental health, a thing that he treats, again, with his music—loading old patches on his drum machine, tweaking sounds on his computer synths, and doing 80’s prom gigs. Ultimately Shawn is making the songs he wants to hear and to him, that is the sound of happiness.

Synthetic Division’s entire catalog can be found on Bandcamp: https://synthetic-division.bandcamp.com

Infused With Music: Elizabeth Vansant

By Shelby Smoak

While she may be a bit too shy to take the stage with her musical talent, Elizabeth VanSant is not shy to bring music therapy to people’s doorstep.

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Along with the rigorous demands of a college degree, Elizabeth recently finished her B.M. in Music Therapy at University of Kansas with over 1,200 clinical hours completed. She pulled up her mid-western roots and struck out for the rainy marine climate of Seattle where she has already started working.

“I’ve actually gotten three music-related jobs since moving to Seattle six weeks ago,” Elizabeth explained. One of the jobs includes working with special needs children and young adults, holding weekly social groups and using music to improve their social skills. Another job includes working with infants and toddlers as a music specialist. And a final job offer is so new she is still awaiting details. Certainly, it’s an exciting time for this twenty-something college grad.

Elizabeth’s passion for music started with dance, but the perils of having hemophilia B soon took away that opportunity. “From all the ballet, tap and jazz I was doing,” she says, “I got a stress fracture in my left ankle and was unable to continue dancing.” Enter then the piano, which she has now been playing since third grade. Along the way she has learned flute, guitar and a variety of percussion instruments. She also loves to sing. All these things are made obvious when watching Elizabeth play: she can fluidly sight read music without missing a note and can match the vocal with near pitch-perfection on any song.

After high school Elizabeth sought an avenue to have a career in music and began studying music therapy. She shares, “I immediately connected with it because I realized that I had used playing piano to express my emotions when learning how to self-infuse. I thought to myself, if I can help people with music in the same way that it helped me, I would be incredibly happy.”

Music therapy however, isn’t just listening or playing music. “While listening to music when you’re having a bleed or are not feeling well is therapeutic, it is not music therapy,” Elizabeth says.

Music therapy is working with a trained professional and using music as an intervention tool to accomplish a specific goal for healing or personal development. All persons receiving degrees in Music Therapy must attend an approved university and, before they can practice, must be board certified by The American Music Therapy Association.

The American Music Therapy Association’s website details several of the therapeutic advantages that music therapy can provide: alleviating pain, enhancing memory, managing stress, promoting physical rehabilitation and others. Therapy is also proven in treating conditions such as Alzheimer’s, autism, pain management, mental health issues and PTSD. Moreover, music therapy can be covered by certain insurances: Medicare under their Partial Hospitalization Program (PHP); Medicaid in certain states; and private insurers like Blue Cross Blue Shield, Aetna and Cigna.

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Elizabeth’s own struggles with hemophilia, she says, likely pushed her into music therapy. Because of her bleeding disorder, she gravitated toward playing more guitar and piano as she was growing up. “It was a release for my anxiety,” she says, adding “and playing piano and guitar certainly helps veins grow right before infusing.”

Now, hemophilia is only sometimes limiting: “One of my target areas is my right shoulder muscle, so sometimes it can be difficult to play guitar, which is the easiest way for me to accompany myself during music therapy sessions.” But that isn’t stopping her. “Thankfully, this hasn’t happened in a while, but it’s something to always be mindful of.”

In closing, Elizabeth advocates for persons to incorporate music in their lives. “Music can help you be more self-aware,” she says, “and it can be an excellent way to express, and even redirect, your emotions.”

In addition to her work in Seattle, Elizabeth takes her passion on the road, running Music Therapy workshops at various hemophilia events and sometimes overcoming her shyness for a few cameo appearances in The Bleeders, a hemophilia-inspired cover band.

More information on Music Therapy can be found at The American Music Therapy Association’s website: https://www.musictherapy.org/

Infused With Music: Trevor Graham

By Shelby Smoak

Bands like Insect Warfare, Napalm Death, 80K, Captain Cleanoff, Deathtoll and Extreme Noise Terror may not be on repeat on the typical stereo, but these heavy-metal/punk bands inspire New Jersey rocker and hemophiliac Trevor Graham to perform with his own grindcore outfit, Organ Dealer.

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Grindcore fuses the fast and aggressive music of metal with the brief song length and political discontent stylings of punk. Organ Dealer began with two of Trevor’s friends in 2014, when Trevor donned the bass guitar to add the undercurrent and punch such music depends upon.

Trevor started playing piano at five before joining his school band and making noise on trumpet, flute, clarinet and trombone. But at thirteen he found the guitar and hasn’t looked back. It was probably a good decision since that passion has carried Trevor all over the US and the world. In addition to US tour dates, Trevor has been lucky enough to play shows in France, Germany, England, Wales, Switzerland, and even the Czech Republic, and is currently booking more dates in Europe as well as Australia.

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In talking with Trevor, he recalls a high point in his life when playing the Obscene Extreme Festival 2018 in the Czech Republic. “Never in a million years did I expect to be at that fest,” he says, “let alone sharing the same stage with some of the bands I grew up idolizing. The crowd and energy were insane and the biggest event we’ve ever played being it’s the largest grindcore fest in the world.”

Trevor is also lucky that his hemophilia hasn’t held him back. In fact, he remarks that the only annoying thing about his hemophilia is having to cart around his portable sharps container.

“So the loss of some luggage space has been the biggest inconvenience thankfully so far. But he adds that “the occasional conversation reassuring people you’re not shooting up dope in the van” is also a concern for this “legal” intravenous drug user.

Ultimately, music means everything to Trevor. “Everything else I do throughout the week is just so I have the means to do this,” he enthuses. “There’s not much I love more than playing live music and recording.” And for the budding musician out there, Trevor has this advice: “Do it. I am of the firm belief everyone should be playing music at some level. It’s very important to life. Plus, if you’re someone who gets bleeds often it’s not like you’re not going to be sitting around a lot - pick up an instrument and make that time productive!”

For passionate music lovers, Trevor has this advice: “I encourage all [persons with a bleeding disorder] to at least listen to as much music as you can. No matter how you’re feeling, music can always help make things better.” So, drop the needle. Listen to music. Go over to Spotify or iTunes and listen to Organ Dealer and feel better!

To hear Trevor’s song, visit: https://organdealer.bandcamp.com

Infused With Music: A Passion That Guides

By Shelby Smoak

Music is everywhere and has always been everywhere. Archeologists claim music exists in all cultures and is found in every historical period. That’s a lot of music!

One of the oldest artifacts is a primitive bone flute dating from over 42,000 years ago, somewhere between Neanderthals and Homo sapiens. These same researchers even claim that music developed before speech, perhaps in the coos or pre-historic warbles of mother to infant. So then, maybe in the beginning there was—music? More interesting than any of this, however, is that music—while ubiquitous to all cultures, all persons, in all times—is not essential to survival. It is not the sustenance our bodies need, nor the shelter we require to live. But don’t tell that to someone like me who cannot imagine a day without music.

Music has always been there for me. The first time it came to mean something more than just background noise was the winter I was 11 and in the hospital for my second knee synovectomy. To keep me company at my bedside for what would be an 8-week hospital recovery, my father bought a tiny cassette player/radio. Each time he visited at the end of his workweek and relieved Mom, he’d have a new cassette in hand. There was Kenny Rogers—okay. Eddie Rabbitt—a miss. Duran Duran—getting hot.

But then came Billy Joel’s “An Innocent Man.” How ironic that title seems now as I think about it echoing against the sterile walls of that tiny hospital room, my surgery leg hooking in the newly-invented constant motion machine. This was 1983, before hepatitis C, before HIV. An innocent man. Even today, it always comes back to “An Innocent Man” and that feeling: at once happy, then melancholy, sad, then break-neck joy.

That spring, still in a brace and on crutches, I started piano lessons. In high school, the guitar found me. In college and after, I joined bands (too many to name), started projects, toured, recorded albums, and played stages up and down the East Coast. At this point, I probably have performed on over 20 albums and 500+ stages, from coffeeshop spreads to college town clubs to New York dives to outdoor festivals. Music has always been there. It is a rich orchestra of emotion that plucks pain from my hemophilia-worn body.

Unlike other art forms—writing and painting—music differentiates itself by actualizing more parts of the brain.

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That is, music is not a Left Brain/Right Brain artform. It is All Brain. It involves sound in the auditory cortex; language (lyrics) in the frontal lobe, rhythm and movement in the motor cortex, memory (who doesn’t flashback when hearing an old favorite?) in the temporal lobe, sight (don’t you see pictures when you hear songs or closely listen to the lyrics?) in the occipital lobe, and, lastly, emotion (oh those feelings!) in the sensory cortex.

The health benefits of music are endless. Journals like The Lancet, Music & Medicine, Journal of Music Therapy and more report on the benefits music provides: improves sleep, improves cognitive function, reduces pain, reduces stress and anxiety, affects heart rate, and improves quality of life. It even improves venous access! (See JAMA Pediatrics and their infusion study for that one!).

In any regard, my passion for music has always guided me. I now lead Bleeder, a project of original music, and am a guitarist/singer in The Bleeders, a cover group who has more or less become the house band at The Coalition for Hemophilia B symposiums. I also present our BioMatrix sponsored program “Singing to Heal,” which is a part-research, part-open mic, part lyric writing workshop. These things brought me into contact with other community member musicians who channel music’s therapeutic value in various ways. I was honored and humbled to meet so many talented individuals, and to immediately bond over not just our communal enthusiasm for music, but our struggles with a bleeding disorder. There was something to this, I said. There was something here worth sharing.

You can stream my music at shelbysmoak.com. And if you are a person with a bleeding disorder who is actively performing and/or recording music, please let me know for a future article: shelby.smoak@biomatrixsprx.com.

With that, I am more than pleased to introduce these athletes of music, those who have the dedication, sweat and tears equal to any NBA All-Star or fledgling soccer goalie.

Please read their stories and check out their music at the provided links:

Camp: To Go or Not To Go... A Mother's Dilemma

By Terry Stone

My name is Terry.
My kid would love camp.
I don’t want to send him.
Kid is sad.
Don’t be like Terry.

Yes, I am (or was) one of THOSE parents. I feel like the decision to send my sweet little precious angel baby son with severe hemophilia to camp was like a meme.

Why should I send him? He’s perfectly happy here with me. There’s lots of stuff to do here. No one will take care of him like I do. What if he has a bleed or is lonely or scared. I braved and survived family camp with him when he was 7 thinking that’s all the camp he’ll ever need. He’ll be so happy we went as a family. He’ll agree with me and not want to go back over the summer by himself. I braved the camp mattresses, camp songs and camp food for him. Now I was sure he would be done with the idea of summer camp. After all, how could I live without him for a week?!

Well, I was wrong, so wrong! For one, those camp mattresses weren’t that bad. Singing around the flag pole brought back fond memories of my own girl scout camp experiences. And the camp food - it was great!

So why was I dragging my feet? Who needs to grow up here? Why didn’t I send my son to camp the first year he was old enough to go? I had no excuse other than it was time for me to grow up. Yes, my worries and insecurities got the better of me. My son was ready. He wanted to go.

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Fast forward to 2019, Matt’s last year of camp. He has loved every minute of camp from day one when he was 9 years old. He has made lifelong friends and credits his yearly camp pilgrimage as relief from the mundane - enough to give him a true mental break from everyday life that he really needed. Camp helped him be who he is today; a confident, smart and empathetic young man who just finished high school a year early and is ready to create his future.

Camp is somewhat of a rite of passage. It’s where kids learn to socialize on their own, much different from the family reunion where you push your child forward as you say, “Honey, go hug your Aunt Joyce.” Sure, he loves his Aunt Joyce, but forced socializing is something kids NEVER forget. Don’t let that be their “remember when” story at the Thanksgiving dinner table. Trust me, you’ll regret it. Remember the meme, don’t be like Terry, send your kid to camp!

Every year my son came home from camp his voice sounded a little deeper, as he narrated tales of great adventures, recanted best songs sung around the flagpole that never made Billboard’s top 100, and told us about new friends, that through the magic of camp have become their own tribe. All are welcome, all are accepted. I watched my son blossom, each year a little wiser, a little more confident, and most importantly, very happy.

Child development professionals recognize camp as profoundly valuable to help children mature emotionally, socially, intellectually, morally and physically. In the bleeding disorder community, there are camps offered by regional chapters across the country and attendance is usually free.

As a parent, we are continually making decisions to care for our children. Camp checks many of the experiences children need in their overall development.

So, as the meme says… don’t be like Terry and delay an experience that will feed your child’s needs and soul, send them as soon as THEY are ready – they’ll let you know! Camp is magical and an experience that will profoundly nurture your child and the lessons and love will last a lifetime.

Chronic Communication At Home: Encouraging Kids To Be More Independent

By Gary McClain, MS, PhD, LMHC

Why can’t I?
Don’t you trust me?
I know how to take care of myself!

If you are the parent of a child with a chronic condition, you have probably heard this from your child a few times, if not many. Based on what my clients tell me, knowing how to respond is not easy.

All children, especially teens, want to have a measure of independence. While resolving the conflicts that arise around independence is never easy, this process can be especially challenging for parents of children with bleeding disorders. Children with a chronic condition like a bleeding disorder may be feeling frustrated about their own limitations and responsibilities, as well as guilty about how these limitations affect other family members, which may result in being that much more intent on being independent. They also struggle with being perceived as different.

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Parents carry the burden of maintaining responsibility for keeping the home together with all fears and uncertainties that go along with the job. In the midst of these challenges, an elephant is wandering around. An elephant that everybody is stepping around but not talking about. Its name is “fear.”

It is only human to have lots of fears around your child’s bleeding disorder. After all, part of your job as a parent is to be aware of and actively preventing the “what ifs.” Chances are, you’ve already experienced some of them, or have come close.

Fear can keep you motivated to do everything you need to do to stay on top of your child’s care. However, fear can also cause you to hold the reins so tightly that you may risk stifling your child’s self-confidence and keep him or her from getting actively involved in their own care.

When kids with bleeding disorders aren’t encouraged to develop independence, the result is stress. First, not making your child a partner in their care leaves it all on you, and you need the help. Second, when kids feel unfairly restricted by their parents, they don’t feel normal and can rebel, placing their health at risk and causing tension at home. And third, a young adult trying to make it on their own, and who has not learned to manage their own bleeding disorder with confidence, is at great risk.


You, Your Child, and Independence: Finding the Middle Road

It’s not easy for a loving and concerned parent not to want to watch their children like a hawk. And I’m not asking you to take unnecessary risks. However, I do think there is a middle road that can keep you feeling confident your child is adequately protected, while your child can also feel more confident and in control.

Here are some suggestions to help you help your child with a bleeding disorder become more independent:

Face your own fear

It’s only human to have fears regarding your child’s health. Acknowledge your fear. Don’t judge yourself for how you feel or try to make it go away by ignoring it. This is the first step toward coping with your fear.

Encourage your child to express his/her feelings

Start the conversation by simply asking how your child is feeling and offer reassurance that you want to hear whatever it is they want to tell you - even the scary stuff. Give a few extra hugs and supportive words.

While you’re at it, let your child know how you’re feeling

Make your home a safe place to talk about emotions.

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Set boundaries but offer choices

Children with bleeding disorders often feel as if they are bound by limitations, which can contribute to a sense of feeling “less” than other children. Provide your child with a sense of control by allowing for some choices in daily routines, in diet and in self-care. Explain the options and reasonable boundaries, share information, and listen to your child’s concerns and preferences. Where possible, come to decisions together. Where appropriate, bring brothers and sisters into these discussions to make them more aware of his or her perspective and to give them an opportunity to make suggestions - don’t forget that siblings have needs of their own.

Teach all children to be advocates

Children with bleeding disorders need to learn to speak up for themselves so that teachers, employers and other adults outside the home are aware of any needs and limitations. They also need to learn to deal with the questions and comments that will inevitably come their way, as do their brothers and sisters. Teach your chronically-ill child how to be a self-advocate through role-playing at home.

Consider attending camp together

Some great camping experiences are available for children living with bleeding disorders and their families. At camp, you and your children can learn from the experts on the latest knowledge and treatment of bleeding disorders. Kids can have fun with other kids who are also living with bleeding disorders, while you share experiences with other parents. Camp is also a great opportunity for kids to learn how to be more independent, even to get started on infusing themselves. Camps are held around the country. Attendance is almost always free, and even transportation may be subsidized.

Remember that not everything is a medical issue

Children are human beings, not medical conditions, and communications don’t all have to revolve around your child’s chronic condition. Many of the issues that come up with kids and teens are developmental.

Remember: The worst thing that can happen is not always the worst thing that can happen

It’s easy to get caught in the trap of “catastrophizing,” making every situation that comes up feel like an emergency. Take a step back and ask yourself: Am I looking at this through the lens of fear? Is this causing me to create the worst possible scenario that may not even be realistic? When your child pushes back on a limitation, keeping this in mind may help you realize that, well, it might just be time to relax.

Take care of yourself

Families facing a chronic condition like a bleeding disorder are constantly at risk for stress. Make sure your own needs are being met. Take care of your own physical well-being and find a safe place to talk about how you are feeling, even the bad stuff.


Parenting a child with a bleeding disorder can be challenging, but don’t let the fear factor keep you from helping your child build confidence and independence.

Be patient.

Take it one day at a time.

Create an atmosphere where all family members communicate with honesty and compassion.


About Gary McClain

Gary McClain, MS, Ph.D., LMHC, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, JustGotDiagnosed.com

In The Middle of Nowhere, But Not Alone

By Shelby Smoak

Syrus O. lives in the middle of nowhere: Castine, Maine. With a population of under fifteen hundred, excitement here involves watching snow banks accumulate in the winter and, so the town website claims, walking Main Street in the summer.

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But outside of his hemophilia, Syrus is not much different from other boys in other more populated places. He loves playing sports and video games, and spending time with his friends. He cherishes learning, observing, analyzing and just plain “existing” so he says. He also loves bleeding disorders camp.

Syrus has been attending Family Camp at Lake Winnipesaukee in New Hampshire since he was a toddler. Though his memory is vague, thoughts of that time and camp conjure up “very positive” feelings, especially of a particular playground he always adored. In fact, Syrus’ act of fervent rebellion was sneaking away from his mother just to go swing on that swing. Camp has always been a welcoming and inclusive space for him. Even when he was little, there was always something for him to do and a place for him to be.

While his struggles with a bleeding disorder have presented some unique challenges in other aspects of his life, camp, Syrus says, hasn’t done anything to exacerbate that. If anything, it’s done the opposite and given him a place to vent about life issues related to having a bleeding disorder, a thing that his non-bleeding disorder friends “just wouldn’t get.”

He is also thankful he can seek advice from those who’ve experienced similar problems. For Syrus “camp is an amazing support network.”

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Syrus describes the camp community as “welcoming and warm” and “full of entertaining, intelligent, charismatic, empathetic, respectful, authentic, resilient individuals.” Camp is home. The community has helped him develop as an individual to the point that, without camp, he feels he wouldn’t be so considerate, so empathetic, so caring and, so understanding. “I look forward to camp every year. Some of my best friends come from that community,” he enthuses.

From camp, he’s learned “what it feels like to be unconditionally accepted and loved.” Camp is, Syrus says, “my family.” He encourages all his blood brothers and sisters to join him at camp. “You’ll definitely get something out of it, and so will everybody else in the process of meeting you,” he says. He adds, “Please - be part of the family. We’d love to have you!” So if Family Camp at Lake Winnipesaukee is your area camp, sign up! Go! And say “hey” to Syrus when you get there!

Say "I Do" To Camp! + The Land of Love

By Shelby Smoak

Perhaps nobody is more grateful for bleeding disorders camps than Christy Tignor. After a history of bruising and nose bleeds, she was initially diagnosed with Type 1 vWD at age 9 and thereafter began her lifelong love affair with camp, and one camper in particular.

Following her diagnosis, Christy’s hematologist connected her with the Kentucky Hemophilia Foundation, and to Land Between the Lakes Camp where at 10 years old, she attended for the first time. Land Between the Lakes was 4 hours from her home and had campers from Kentucky and Tennessee. Even though Christy admits she grew quite homesick that first year of camp, as the week wore on, fun took over so that by the end Christy was eager to go back the next year, and the next, and the next. And then there was David.

Since very few girls attended Christy’s camp in the 1980s, boys could be found a-plenty. And one particular boy from Tennessee, David, took a special interest in Christy by giving her piggyback rides when someone ran off with her shoes or trying to snap her picture. So smitten was David with Christy that, as he himself admits, he even dragged a hair dryer and hair spray to camp to style his hair to look good for her. That’s right: David’s essential survival camp list included a sleeping bag, pillow, toothpaste, snacks, hairdryer and hairspray. The girls were able to ditch the hair dryer and hairspray for the week, but not David!

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The budding romance soon flourished at Land Between the Lakes. Each year Christy yearned for camp where her excitement to see David and hang out with him as much as she could, grew into a full-blown crush. Then, at 22, Christy confessed her crush to a mutual friend and her concern that David did not feel the same way. She felt he had grown distant and aloof, and perhaps failed to reciprocate her feelings. Luckily their friend was a born matchmaker and quickly told David of Christy’s crush, which spurred David into action. He called her. And their first conversation outside of camp topped at over 4 hours and concluded with plans for their first date. And it seems David really did have Christy at “Hello,” because she claims that after that first call she knew she was going to marry him.

The next year they got engaged and the year after they tied the knot! And where better to sow the seeds of matrimony than, well, at camp! The day after camp was over, they married at Brandon Spring Group Camp, the spot where, 14 years earlier they had met. Two years after marriage, Christy and David welcomed their daughter, Lily, into the world. After Lily’s birth, Christy found out that she actually has a platelet disorder rather than vWD.Their son Zachary soon followed.

“Even though I do not attend camp any longer, it still has a very special place in my heart,” Christy says. “Not only did I meet the love of my life there, but I also made lifelong friends.” Their daughter now carries on the tradition.

Each year, Lily looks forward to camp where she is a counselor alongside her father. And each year, the happy couple can only wonder what camp may give their daughter. Could a camp romance repeat itself? Is there something special in the water at Land Between the Lakes? Of course, Christy and David think so!


David Tignor, or “Tigger“ as he is more fondly known, has been going to camp since 1981 when he was 6 years old. Today he is, well, an adult. Do the math. And his camp experience is extensive. He attended as a camper until age 17, when he transitioned to a junior counselor.

For the past 26 years, David has served at numerous camps in Tennessee and many other states as a counselor, Leader-in-Training Director and Activities Director, among other roles. David has brought his counselor experiences to hemophilia family camps in Maine, Montana, and Alaska as well as widely known camps like Tapawingo in Oregon and Hot-to-Clot in Pennsylvania. However, Tennessee’s Land Between the Lakes will always hold a special place in David’s heart because that is where he met Christy.

They met in 1985 when both were 10. Since there were very few girls at camp, David admits “they got a lot of attention from the fellas,” but luckily, he — armed with a hair dryer and hair spray, camp essentials in his mind —was able to woo young Christy. That the two could also swim helped as they were allowed into the pool’s deep end where David had exclusive conversation rights to Christy without interruption from other campers. Each year, they returned to their home states— David in Tennessee, Christy in Kentucky—their secret crush burned until summer returned.

In later years both serving as teen counselors and when in their early 20s, Christy was just about ready to give up since she felt Tigger was no longer interested in her. However, a mutual friend had the good sense to intervene. David made the call to set the situation straight and the rest is history; they dated, David proposed, they married at their beloved camp Land Between the Lakes, and soon their family grew. First came Lily, now 17 and a camp counselor having mild hemophilia herself, and Zachary, now 11; a loving son with special needs and a joy to all who know him.

For David camp is more than the educational and learning experiences. It moves beyond swimming, fishing, canoeing, archery, arts & crafts, or carnivals, tournaments, pool parties, and talent shows, or even Gold Rush, an event where campers find “fake” gold that they can spend at the general store and pizza parlor. The real gold for David is the ability to be around children and adults who also live with a bleeding disorder. “It opens doors to lifetime friendships,” David says, and “demonstrates that living with a bleeding disorder is just a normal part of our lives.”

Camp was extremely important to David as a child, but even as an adult, camp thrills him and he grows equally excited to go. “Camp Freedom opened doors to some very amazing experiences and learning opportunities,” he says. “To this day, I still get butterflies when I drive onto the camp ground at Brandon Spring Group Center at Land Between the Lakes where I get to see my second family every year!”

The Benefits of Kinesio Taping: Ask The HemoDoc

By Dr. Michael Zolotnitsky, PT, DPT

Ever rolled your ankle or bumped your knee forcing you to limp around a few days, use a brace, crutches or even a wheelchair? How about a jammed finger, twisted elbow or wrist bleed that made you avoid using your arm making simple things like shaving seem so challenging?

The question lies in what you do when this happens. Do you rest, or do you move?

Growing up with severe hemophilia, I woke to countless mornings not being able to walk because of insidious thigh bleeds. I cautioned myself during basketball to avoid another jammed finger that would inhibit me from closing my hand for days. At a young age, I was unsure of how to manage persistent bleeds aside from my prophylactic treatment. Upon completion of my doctorate in a physical therapy program, I made it my mission to educate the bleeding disorders community.

Dr. Michael Zolotnitsky

Dr. Michael Zolotnitsky

It began with aquatic physical therapy, alternatives to pain management, safe sports and safe exercises. Then I discovered elastic therapeutic tape, also called kinesiology tape, Kinesio tape, k-tape, or KT, an elastic cotton strip with an acrylic adhesive used to treat pain and disability caused by athletic injuries or other physical disorders. Using this helps control pain and support weak muscles. Two years ago, I delivered my first kinesiology taping presentation teaching individuals with bleeding disorders how to properly apply Kinesio tape. The results? Individuals with joint issues found pain relief and could move more quickly and comfortably.

Kinesio tape provides the support of a brace, but with flexibility to prevent limited range of motion and reduce muscle contractures.

It can also facilitate weaker muscles or inhibit tight muscles from firing. One of the most effective taping techniques helps reduce swelling by draining lymphatic fluid or draining synovial fluid.

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Without proper instruction, applying Kinesio tape can cause more harm than benefit. For those who are unable to work with me in person, a YouTube channel (hemodoc) is available as an online resource. My goal is for every individual to live life to their fullest and not allow their medical condition to define their ability!

Individuals are not created equal and it’s difficult to have a “one size fits all” solution. My advice is to first consult with your physician or hemophilia treatment center, ask about the use of Kinesio taping in your individual case and check out my YouTube videos for guidelines on how to effectively apply Kinesio tape to help alleviate painful joints.