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Zayd, living with Hunter syndrome
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Zayd is a funny, smart, and talented adult living with Hunter syndrome. He practices tai chi and plays the trombone. He is also an amazing public speaker and an even better friend, brother, and son. Zayd is also currently pursuing a PhD. Even though he’s young, he’s learned a lot of lessons—many of them outside the classroom.
“In elementary school I didn’t have many issues with people pointing out my condition, because I wasn’t looking that different. But in middle school, the differences became more apparent.”
“I remember the first day there; I was all alone. I didn’t have any real friends that transferred with me from elementary school. The first thing I was greeted with was somebody making a snide remark about my condition. That didn’t happen in elementary school, and I was definitely unprepared for it.
“Looking back, I wish I was more aware of my condition going in. It is very disillusioning when you find out the hard way that there is something different about you, but I got through it. I found ways to cope.”
One of the coping strategies that worked for Zayd was to focus on an activity instead of his condition.
“I got good at the trombone, and people were starting to know me for that instead of my condition. That’s how I started coping with it from middle school into high school.”
In addition to the physical obstacles he faced, there was a big emotional one.
“The challenge was being able to see myself as somebody who could succeed. We had a musical director who was very good at making what we did seem competitive and something worth striving for. At one point I finally said, ‘Wait a second. I can get good at this.’ My mindset changed. Having that fuel of competition made a big, big difference for me, even though I wasn’t very athletic or whatever.”
This focus gave him both a sense of purpose and an opportunity to be known for something beyond his condition.
“I wasn’t used to getting awards. I’d seen all these friends win athletic awards and things like that, but I never had. So being able to go to this place with these judges and be recognized for who I had become by dedicating so much was extremely powerful.”
But most of all, Zayd was forming friendships with the people in the band—especially in the trombone section.
“They were some of the best friendships that I had. The beautiful thing about these friendships is they would never make any kind of comments about my condition. They always treated me like just a very cool person."
“I was surprised by how deep the friendships could get. One boy I remember was also going through some hard times. He had been in a car accident at an early age. Because he knew there was something different about me, I think he felt more comfortable being himself around me. We were all bonding over this shared instrument that was a very, very powerful recipe for good friendship, and we stayed very close friends throughout middle school."
“I imagine it’s similar to other kinds of organized activities, whether it is sports or clubs or whatever. There’s something about going over a hurdle with others that brings you together. And I hadn’t felt this sense of community until I discovered band.”
For Zayd, having real relationships is very important. He values the connections he can have with others, and he seeks them out in his day-to-day life. But Hunter syndrome has created barriers for Zayd to overcome.
Zayd had a mentor who once told him, kindly but clearly, “Some people are going to feel uncomfortable around you because you’re different.” While that’s true, he doesn’t want to focus on it. To build bridges with those around him, Zayd puts people at ease so they can open up to him.
“As I got older, I started learning about using humor to defuse discomfort. I talked to somebody who worked in the comedy business, and they said that even if it’s a bad joke, you’re addressing what’s already in somebody’s head a lot of the time. Somebody will be thinking something, but they’re afraid of how you’re going to respond if they say it. So I just go ahead and make a comment about it first.”
“So these days, I just go and point out some weird thing that’s slightly funny about my appearance, and that usually defuses the tension. Like when I’m giving a speech and there’s a really high podium I’ll say, ‘You know, I never use these things because nobody would ever see me if I did.’ Something stupid like that is enough. If you can take yourself less seriously, it’ll help them feel less uncomfortable.”
Zayd knows it may not be his responsibility to make other people comfortable. But for him, it’s a fast and easy way to connect with people.
Have a simple explanation ready to go that explains your condition and symptoms.
Invite people you trust and care about to ask questions. You can anticipate the likely first question on many people’s minds and explain that Hunter syndrome is not contagious.
You’ve been living with this, but they haven’t. They may not understand what you’re going through yet. Try to give them time to catch on and catch up.
Being candid with people you trust about your condition and your experiences helps them find common ground with you. They will have had their own challenges, which can help them understand yours.
There are many ways you can advocate for others with Hunter syndrome:
Zayd, living with Hunter syndrome
When faced with problems, Zayd is not the type of person to sit back and wait for others to fix them. He’s a natural problem solver, and that hands-on attitude has led him to discover key things about himself.
“Tai chi represented a lifeline for me. My whole life I’d heard, ‘You’re limited, you’re limited, you’re limited. You’re not going to be able to do this and that.’ Then I read about tai chi, where your body can respond to certain movements. It was the first thing I had seen that offered hope that it was possible to move beyond those limits.”
“My experience with exercise until then was dumbbells and push-ups—building muscle and pushing through the pain. It was completely physical.”
People with Hunter syndrome should always talk with their healthcare provider before starting an exercise routine.
“Tai chi was focused beyond just the physical. It had a lot to do with mental focus and with moving the internal energy of your body. That was incredible for me.”
“This came right after a back surgery, at a time where I was even more physically limited than usual. I realized that even if my Hunter syndrome is limiting, I could still do certain things. Tai chi and qigong have very flowing, soft movements that I can do without pain.”
“I found that my body did respond, and that started a whole journey toward discovering that exercise goes beyond just building muscles. It’s more of a holistic, mind-body-spirit kind of thing. My condition does still limit me considerably. But now it’s a constant interplay, almost a call and response between my condition and my exercise as I move forward and push back those limits, even if just a little bit.”
Zayd has found a physical activity that he feels comfortable with and that helps him feel good. It’s important to keep in mind that everyone’s body is unique and reacts differently to exercise. You should always talk to your healthcare provider about your specific situation and needs. Your healthcare team will always be your best source of information.
Zayd, living with Hunter syndrome
The beginning of college was a tough time for Zayd. As he entered this new phase of his life, he felt like he was taking one step forward and three steps back—socially and academically.
“When I first started college it was extremely hard, and I really had no idea what to do. Not only was I in a new place, but I didn’t know how to manage my time between taking care of myself and staying on top of my rigorous coursework. My grades started dropping from straight A’s in high school to C’s and D’s that first semester."
“I was extremely isolated. Actually, that was probably the loneliest time of my life. I spent a lot of time wandering by myself. I should have been more persistent about cultivating a social life. I didn’t even know clubs existed, and I don’t think I was really interested in finding out that they existed. Eventually I did try to join the College Ambassador program, but the interview went horribly, and I never heard from them again. That really put me down, and I didn’t want to try anything else after that.”
But then Zayd came across a series of books that really resonated with him. They were about goal-setting, the habits of successful people, and personal improvement tools, and they set him on a path toward purpose and self-knowledge.
One of the authors suggested saying out loud one’s sense of self, goals, and hopes, and then writing them down on a piece of paper. So Zayd wrote out who he wanted to be in the world. Then he put it into practice by examining himself and setting weekly goals.
“Goal-setting helps you reflect on your life. For example, I ask myself, ‘How am I going to improve my social skills?’”
“So I set the goal to attend these social gatherings with my colleagues or join this or that club. Or I might think about role-based goal-setting and think: OK, as a brother, I need to do this with my sister; as a son, this is what I’m going to do this week with my mom.”
“As you meet your goals, you can see progress and accomplishments. I want to feel that every week. Having this method helps me focus on what I can do on a daily basis. It’s one of the things that really, really helped me and continues to help me as I advance in life.”
Zayd has revised his original statement from college over the years, but it still guides his way. Every week, he takes time to see where he can do better at living up to his goals.
