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Jason

living with Hunter syndrome

Jason, an adult living with Hunter syndrome

Jason

living with Hunter syndrome

Discover Jason’s stories

Discover Jason’s stories

Creativity And Finding Acceptance

Jason, living with Hunter syndrome

Living with Hunter syndrome can sometimes feel isolating, as mobility challenges can make certain activities such as playing sport difficult. But for Jason, finding a creative outlet became the key to overcoming these feelings of loneliness and exclusion. Performing under his stage alias, “Mad Dog,” Jason demonstrates how music and creative expression can help you to find acceptance and build a sense of community.

Finding his passion

Jason enjoyed sports growing up, but physical limitations made it difficult for him to fully participate. Looking for a new hobby, he eventually found his love for performing through participating in school plays. Despite being naturally shy and introverted, his school teachers recognized his potential and encouraged him to pursue this creative path.

It was one of these former teachers who dubbed him “Mad Dog,” a nickname that has since become his onstage persona, allowing him to create a world where he is defined not by his condition but by his talent.

“I think it was a way to escape, initially, to create your own world—a world that you had control over, not the world where you were forced to go to doctors, not the world where you were forced to go away from your peers, and you get made fun of.”

As he delved deeper into the performing arts, Jason found his “tribe,” a group of like-minded people who, like him, felt as though they didn’t quite fit in. These people shared the same quirky and wonderful interests as him. Through this newfound community, he formed strong friendships and eventually cofounded the band The Scurvy Pirates. The band became a platform for him to embrace his physical traits rather than hide them. On stage, those traits became celebrated parts of his character.

Hunter syndrome patient playing a guitar

“What I liked about doing it, is the character that I developed for the Mad Dog Madison, the way I carried myself, I didn’t have to hide a lot of the issues physically… because I walk differently, because I’m stiff, or my hands or even the facial features.”

Finding acceptance through performance

Performing not only allowed Jason to express himself, but also provided a sense of acceptance from his community.

“You see people you never met singing along to the song that you wrote. It gives you that feeling of acceptance, and you forget about having the disorder. For that moment, it’s just you being accepted for what you decided to put out into the world. So that’s a big part of why I think I’m just so drawn to that.”

Hunter syndrome patient playing in a band with friends
“We’re not looking for pity. We’re just looking for understanding and acceptance”

Along with acceptance, his involvement in music has brought him lifelong friendships. His bandmates have been a source of support through his journey with Hunter syndrome. One of his closest friends and fellow bandmates, Devin, reflects on how Jason has turned his struggles into something beautiful: where Hunter syndrome “was once a prison cell, and now is absolutely an art museum!”

Due to limited flexibility in his fingers, Jason has had to adapt the way he plays the guitar, creating, as Devin calls it, the “Mad Dog scale of rock and roll.” Devin explains his favorite moments are when fans flock to Jason at the end of a performance, saying “Dude, you have to explain to me what you were doing on stage,” and wanting to learn how to play the guitar just like Jason.

Advice to the rare disease community

Finding a passion for creativity gave Jason a sense of purpose, and he recognizes the importance of not letting the physical limitations be a barrier to living life fully.

“It changes the way you deal with the disorder because, you know, no one wants it, no one likes it, but you can’t escape it. So, try to find a purpose that you can fill your life with.”

“Don’t be afraid. Don’t be afraid to give it a try. You might not be able to be the quarterback for the Buffalo Bills, but you can get enjoyment out of playing football, and you can support your team. You can even do things that are related to the game, even if it’s not being out there on the field.”

“Don’t think ‘because I can’t walk very well, I just have to sit at home and, you know, grow moss as I vegetate.’ Get out there. You can do more. You’re stronger, even though your parents might be treating you like you’re a precious Fabergé egg.”

He encourages others who may be feeling isolated to explore new hobbies and not let their diagnosis hold them back.

“Go out there, be a little careful, but go out there and try it!”

Championing Hope as a Hunter Syndrome Advocate!

Jason, living with Hunter syndrome

Jason, adult living with hunter syndrome, reading a book
Cartoon Yellow and Purple MPS Proud Advocate Badge

Jason Madison was diagnosed with Hunter syndrome at the age of 3, but he hasn’t let it hold him back. Now in his 40s, he sits on the board of directors for the National MPS Society, an advocacy group that supports individuals and families affected by the rare MPS diseases. Where the group was once led primarily by parents, Jason has helped transform the conversation around Hunter syndrome, bringing a new perspective and lived experience.

Jason loves being able to support others in the rare disease community. While many feel the need to hide their condition, Jason explains that he wears his condition like a badge of pride, feeling a responsibility to use his voice to help others. Read more about how Hunter syndrome has shaped Jason, and his passion for advocacy in the interview below!

Q
How has having Hunter syndrome shaped you into the person you are today?
A

So first and foremost, it's probably made me more empathetic to people who have difficulties. So, with my experiences with Hunter syndrome, I’m more empathetic, more sympathetic, and patient with people.

I don't want to say it's a gift. I would say it's more of a learning tool that I have been given that gives me a different perspective. So, I can do my small little part to try to make the world a better place.

“It’s a challenge. It's a struggle. It's made me softer in some ways but hardened me up in other ways.”

Q
What kind of advocacy work do you do?
A

Being involved in the National MPS Society, I express how I’m feeling to try to get our local lawmakers to understand the importance of certain funding bills or legislation that will be helpful.

I joined the board of directors, and it's been a process of learning to find your voice because you're coming at it from a different perspective. A lot of the board members are family members, and they're there because they're the mama bears, the papa bears, doing everything they can for their kids. The adults are coming at it from a different perspective. We are the kids; our priorities are different. Based on the success of the MPS society, more and more of us are living to be adults, so we have to be heard.

I will also be a liaison for different groups, talking with other Hunter syndrome families, talking with other adults, and a lot of times I'll talk with newly diagnosed parents. They look at me, and they want to see their kid get to where I am, you know, and have that life. So, that's a lot of what my role is. There are many different aspects of the National MPS Society that need to be filled because it's a fairly big organization. My focus is definitely more on communication and trying to get the word out.

National MPS Society Logo

“I'm very proud of the MPS community as a whole, because we're all working for the same goal.”

Q
Why is it important to advocate for the rare disease community?
A

Working with the MPS Society helps me get the message out, for the better of not just our organization, but all the rare disease community.

Even to this day, there are people who have been diagnosed very recently who are much older than I am, who their entire lives were misdiagnosed. Or the doctors didn't know what they had, so advancements like newborn screening and stuff like that is so imperative.

I'm very blessed with still being able to communicate well. There are a number of people that I know that might not be able to talk, for whatever reason, or not hear, and it breaks my heart that they aren't able to connect with the world outside of their family. I just wish there was more outreach within their local community to embrace them or just accept them for who they are, and work with them to find ways so they can feel like they're a part of the community, so they can feel like they can engage.

I try to be a voice in the community, because a lot of the time people feel like they can’t be heard or no one’s going to listen to them. As an advocate, you’re going to be loud about it anyway. You’re going to still be a thorn in people’s sides, and hopefully the message gets across.

Q
What do you find most fulfilling about your advocacy work?
A

I like meeting people, talking with them and hearing their stories, and hopefully they like hearing my stories too. Sometimes they're a bit off the wall! And I like having the opportunity to travel, hearing the stories of why people are doing what they're doing. You know, there’s such a diverse range of motivations and backgrounds, and that’s what I find most fulfilling about it.

Jason, living with Hunter syndrome smiling at the camera
“It can be encouraging to a lot of the younger kids to have someone to look up to that many of us didn’t.”
Q
What steps would you recommend for someone wanting to get involved in advocacy for rare diseases?
A

Just be involved. I think the best thing to do for the community is to be open to lending a helping hand to those who are in need, for the people in your community locally and within the rare disease space.

I would say reach out first to different organizations like the National MPS Society, and work within the community to talk to your legislators, talk to your local politicians, to put laws into place to help early diagnosis, and help with the ease of healthcare. A lot of these health care options are incredibly expensive, and sometimes it might feel out of reach for a family, so spread information about all the other organizations that are able to provide financial or logistical information.

Yellow steps with black cartoon arrow moving up them

I would say come to a conference and see the patients that are there, because the work that you're doing is the reason that they're there. Before that, a lot of them wouldn't be there; they wouldn't be with us. The work that you're doing is going to make even more people come to these conferences.

Jason’s interview shows how advocacy plays a crucial role in driving meaningful change, amplifying the voices of those who might otherwise go unheard. It raises awareness, influences policy, and provides essential support to individuals and communities in need. Jason is an amazing role model, showing how dedication and passion can drive change and help to build a more inclusive and compassionate society!

Find out more about the National MPS Society's advocacy here.

COORDINATED CARE AND HOPE FOR THE FUTURE

Jason, living with Hunter syndrome

Jason, living with Hunter syndrome, looking into the distance

With so many aspects of the body affected by Hunter syndrome, a network of healthcare specialists is needed to manage the range of symptoms. Specialists such as geneticists, cardiologists, and ENTs each bring vital expertise, but coordination between specialist teams is the key to optimal care. Jason describes his journey navigating the healthcare system below.

Early symptoms and diagnosis

Jason’s childhood was full of countless doctor visits, surgeries, and confusion. He remembers having recurrent ear infections and needing to have several operations, including the removal of his adenoids. The doctors treating him were unaware of the underlying cause, and so his symptoms were being managed like common conditions such as asthma. It wasn’t until his mother began noticing subtle signs—dexterity and hearing issues, and unique facial features resembling those of some of their male family members—that she sought answers. Her determination led to Jason being diagnosed with Hunter syndrome at the age of 3.

Coordinated care is key

For Jason and his mother Sharon, building a care team that met his needs was not easy, and he celebrates the improvements he has seen and experienced in healthcare since he was first diagnosed.

“The big thing about care now, as opposed to how it was when I was growing up, is there’s a lot more emphasis or push in these different medical institutions and networks to create a care team that addresses all the different issues.”

“That wasn’t the case when I was growing up. When I was growing up, it was just any doctor. And a lot of the doctors and specialists didn’t coordinate with each other.”

Despite celebrating the promising steps that are being taken toward coordinated care, Jason recognizes that there is still some way to go, and he encourages those living with Hunter syndrome to be assertive in voicing their needs.

“If you are a part of a medical facility or network that doesn’t have that, you should push for it. You should advocate for it. Have these people work together.”

Jason, living with Hunter syndrome, reading at a desk

Another healthcare challenge that Jason has faced is physicians not addressing his specific needs when managing his symptoms.

“When I got sick in this hospital last summer, the pulmonologist kept trying to treat it like asthma. I was like, ‘No, this is not going to work,’ and I am very fortunate to have connections with very good MPS-centric doctors who gave their time to talk to the doctor to inform them on the right treatments.”

This kind of experience demonstrates why improving awareness of Hunter syndrome, among the general public as well as in the healthcare sector, is so important. Jason is a keen advocate for MPS awareness—you can read about his efforts .

The importance of a geneticist

Encouraging your care team to work together can be difficult, but as Jason highlights, geneticists can help to bridge the communication gap.

“They’re more aware of the complete body system. You know, they’re not experts in the heart, but they know how it affects the heart and the lungs. So, then they can give proper information to the person that’s actually caring for that exact specialty.”

However, finding the right geneticist can be a challenge. Jason recommends reaching out to advocacy groups such as the MPS Society, or connecting with the wider MPS community for personal recommendations to find the right geneticist for you.

Illustration of a blue DNA double helix

“It helps you feel like you got someone who’s an expert that is on your team—they’re going to help you out during the hard times because they know what’s going on. So, that’s the wonderful thing about having a geneticist or a genetic counselor.”

For more tips on finding the right specialist for you, visit our Finding a Specialist page.

Hope for the future

Although there is still a way to go with raising awareness of Hunter syndrome, Jason celebrates the ongoing progress in medical advancements and expresses hope for the future.

“The hearing aids are better. The glasses are better. They’re doing more research on what exactly in the eyes is the problem for these particular types of disorders, which we didn’t have back then. So, for me, I find that incredibly encouraging. There’s still a lot of room to work, but a lot of the information is actually out there where it used to not be.”

“It’s amazing, the levels of advancement that there are now when you go to a scientific conference, compared to 20 years ago,” Jason adds. He also extends his gratitude to doctors working in the field, acknowledging that none of this would be possible without them.

“One thing I would like to say is I’m incredibly grateful for all the hard work and dedication that all the scientists and all the clinical physicians have put in. Everything that you have done has helped not only my life personally, but also my family’s life and so many other families that gave them hope and a sense of well-being, and a sense of purpose that they wouldn’t have had if it wasn’t for your hard and diligent efforts”

Jason, living with Hunter syndrome, looking to the side
“Now when you go to healthcare professionals, it’s like, we have this—we can try this. There’s a greater level of hope.”

AGING AND LEARNING TO SLOW DOWN

Jason, living with Hunter syndrome

Jason, an adult with Hunter syndrome, smiling proudly and looking into the distance

Adapting to symptoms

Hunter syndrome has a wide spectrum of severity and affects each person differently. Jason considers himself fortunate to experience an attenuated, non-neuropathic form of the disorder, allowing him to live independently. However, as Jason recalls, it has not been an easy ride, and coming to terms with the disorder in his younger years was a struggle.

Jason, living with Hunter syndrome, leaning on kitchen counter
“I kind of ignored it. Because I was mild, so I could kind of… I didn’t want to think about it. Didn’t want people to know about it, to judge me for that.”

As Jason's symptoms progressed with age, he began to find ways of opening up about his experiences.

“It’s something I can’t ignore anymore, but I’m also not afraid of it. I’m more open about talking about it and letting people know I might have difficulties, without fear of being ostracized.”

Joking that turning 30 is like being 75 in “MPS years,” he describes how he’s had to take things slowly to manage the physical challenges that come with aging. His eyesight has deteriorated, he tires more easily, and his mobility is compromised, especially after undergoing neck surgery.

He’s also more aware of the risk of illness, knowing that even a common cold could hit him harder than before. He has become cautious, making sure he washes his hands frequently, and wears a mask in crowded places. Falling is another concern—as Jason has aged, his joints have become stiffer, and injuries take much longer to heal. “It happens to everybody when you get older,” Jason explains, “it just happens to me a little sooner.”

On particularly rough days, Jason struggles with severe pain, making even simple tasks feel overwhelming. “I know I have all these good stories, crazy experiences, but I always feel like I haven’t quite done what I was supposed to do,” he says, talking about feeling unproductive on these rough days. However, he has learned to embrace rest, taking these moments as opportunities to enjoy less physically demanding hobbies such as reading and drawing.

Jason, living with Hunter syndrome, reading at a desk
Cartoon stop signs saying time to take a break
“You need to stop today, and that’s okay to do that.”

Advice to your younger self

While Jason is no longer afraid of showing his vulnerabilities and asking for help, this was not always the case. During our time with Jason, he reflected on his experience with Hunter syndrome and shared that, if he could, he would go back and tell his younger self not to worry so much.

Jason, adult living with hunter syndrome, reading a book
Q
If you could give a piece of advice to your younger self, what would it be?
A

The advice I would give to my younger self is try to relax. Don’t be so worried about what other people think. Don’t worry about things that you feel like you don’t have because of the disorder. If you’re going to get them, you’ll get them in due time. Don’t worry.

So much energy was wasted on worrying about things I didn’t have control over or worrying about what I felt like I was missing out on. So I’d tell myself, just, just relax and also don’t be so afraid to let your friends and the people that love you know what you’re going through, because they’re still going to be your friends and are still going to love you. That’s the whole point of having a friend or having a loved one like that. So that was probably the biggest.

Wear more hearing protection when you’re at concerts and when you’re playing. It may not sound as good, but wear more hearing protection!

Also, take time to enjoy those moments that you think are going to last forever. You know, just take a moment and pause and just enjoy. And that’s what I try to do nowadays. I’ve learned to take time to just kind of enjoy what I can while I can now, you know, just take a moment, just appreciate life that you have.

Living with Hunter syndrome presents unique challenges, but Jason’s journey serves as a powerful reminder of the importance of resilience, embracing life to the fullest, and knowing when to slow down and take a break.

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