As Adults with DMD, We Have a Responsibility to Mentor Younger Generations

Hawken Miller avatar

by Hawken Miller |

walk, inspiring, creativity, columns, Self-quarantine

Adults with Duchenne muscular dystrophy (DMD) should help younger generations through the difficult parts of growing up with a rare muscular disease. They need someone in a similar situation to look up to, relate to, and learn from.

I recently met a high schooler who is about six years younger than me. Our meeting showed me how much of an impact the adult DMD community can have on younger people. 

His challenges were similar to those I faced in high school and college. He wasn’t sure what career to pursue and felt constricted by what people might think of him. Knowing I overcame similar difficulties, I reassured him that everything would work out and encouraged him to forge his own path regardless of societal norms.

It would have been great to have an older friend with DMD walk me through life’s unique challenges. I often wondered what my life would be like after school. I’m sure plenty of other adults with DMD were out there succeeding. But I feared the future because I did not have a mentor to look up to.

We also can be a friend who is willing to listen. In a previous column, I wrote, “Knowing I’m not alone makes it easier for me to navigate the everyday hurdles. It’s a group effort even if we don’t see each other.”

You can still benefit from such a friendship, even if you aren’t the same age. Age differences could even strengthen the relationship. 

Talking frankly with someone who overcame similar challenges makes life easier. They’ve dealt with the same ignorant people, physical barriers, and educational hurdles that you have and have lived to see another day. That’s the kind of friend that boys with DMD should have.

Bonding over shared experiences is just one advantage of having a mentor relationship. Additionally, those being mentored benefit by avoiding the mistakes of their mentor. 

Sometimes I let my pride get the best of me. It took me too long to overcome my fear of asking for help. As a result, I missed out on social activities. I felt like a burden and was cut off from true independence. As a mentor and friend, I can warn people about falling into the same trap and teach them how to ask for assistance.

Helping younger generations find their purpose and overcome adversity is one of many ways that we can give back to the DMD community while building lasting friendships.


Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.


Tony Ssimbwa avatar

Tony Ssimbwa

Thanks Miller,

Your peace of information is encouraging, especially to us who are living in Africa, where DMD is totally a new thing, two months ago my 3 year old son was diagnosed with DMD,it was the first we had about DMD in our life, we totally don't know how to manage this, and almost no one to look too here in Uganda. So the situation is really grey for us. Reading from you is very encouraging and I wish to learn more and more as I find it useful to learn from people like you from a nation with advanced solutions for taking care of DMD patients

Tony Ssimbwa
Uganda East Africa.

Riccardo avatar


Ciao HAWKEN MILLER, sono un padre (Babbo) di un bambino con la DMD di 7 anni. Abitiamo a Firenze, in Italia, leggo spesso su Muscular Dystrophy News i tuoi articoli e ciò mi rende consapevole ogni volta che la vita può andate avanti nonostante le difficoltà giornaliere. Inconsapevolmente stai aiutando non solo i malati di DMD ma anche i loro Caregiver. Ci fai immaginare che ci può essere un futuro pieno di emozioni e gioie per nostri figli.
Un grazie di cuore


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