Leading up to Rare Disease Day 2021, we highlighted people in our community who have overcome the challenges associated with a rare disease diagnosis and started a successful career. On the CRD blog, we shared stories from people from all backgrounds and around the world to inspire young people with rare diseases and prove a future is possible beyond the diagnosis. Below, find a compilation of these blog posts as well as their greatest words of wisdom for younger patients.
Dr. Justin Cohen: Researcher, Yale Medical School
Despite an early and severe diagnosis with FSHD, one of our researchers from the Lek Lab at Yale School of Medicine, Justin Cohen, has persevered. After being told the world was not designed for his success, he created one that did.
His best advice for younger patients: “do not despair when facing the numerous barriers of living in an inaccessible world. No one is alone in their fight and there are resources out there to help you succeed, so long as you continue to seek them out. As long as we do not give up, we are making a difference.”
Read about his fight for accessibility in his academic and professional endeavors that led him to take action against his own rare disease here.
Terry Horgan: Internet Technology Professional, Cornell University
Terry Horgan, who was diagnosed with Duchenne muscular dystrophy as a child, has turned his passion for computers and internet technology into an IT profession.
Terry’s advice for younger patients: “I think everything depends on a person’s outlook in life. If you have a positive outlook, you can do almost anything. And so my advice is don’t look at a disability as something that is an end all be all. Yes, it’s a terrible disease but it won’t stop you from being the next Bill Gates or Mark Zuckerberg. Society is more accessible than it’s ever been and it’s important to follow your passions…The other piece of advice is to advocate for yourself. Doctors and others can sometimes think they know it all and are just there to tell you what to do. The perspective of the person living with the disease is very important and should be included in all aspects of care.”
Learn how he navigates his rare disease while maintaining a successful career in our latest blog post here.
Vivek Gohil: Freelance Writer and Accessibility Consultant
Despite living with Duchenne, Vivek Gohil makes it his mission to improve the lives of other people living with disabilities. He discussed his advocacy work which proves a full and active life is possible after a Duchenne diagnosis.
His best advice for younger patients: find your own solutions to the obstacles you might face. His solution is often technology due to the nature of his job, but this can be individual to each person. There is always a solution as long as you look for it.
Read his full blog post here.
Megan DeJarnett: Entrepreneur, No Such Thing Co.
Megan DeJarnett, CEO and founder of No Such Thing Co. sat down with us to discuss the inspiration behind her business, and how she navigates her career and motherhood while also battling SMA.
Her best advice for younger patients: No matter what your condition is or what you are facing in life, we all have passions; dreams; and things that we are good at and we have to be creative on how to make use of them. There will always be a way to do it, but the way you might accomplish your aims might be different. She further expresses that you should just attempt your goal and not wait for the circumstances to be perfect, or until you have all the answers; it is okay to learn along the way. She also cautions to avoid comparing yourself to others and to simply work with who you are. She lastly regards the importance of balance and having her husband and close friends as a support system in keeping her focused throughout her journey.
Read about Megan’s journey here.
Gems Godfrey: Self-Portrait Artist and Photographer
Gems Godfrey, a rare disease artist, describes her journey into photography and how she uses her camera to express herself and bring awareness to limb-girdle muscular dystrophy after her diagnosis.
Her best advice for younger patients: “The advice I would give to anyone out there in a similar situation to myself is to not give up on yourself. There will be days where you can’t physically do a task & you need to rest, then listen to your body & take that rest, but as long as when you feel you have a little more in you to be able to physically achieve something, no matter what that is. Whether it is washing your face, preparing a meal, or starting a project in something you love, whatever it is, just don’t give up on yourself.”
Read the full blog post here.
We hope that these incredible individuals can serve as an inspiration for all rare disease patients who feel hopeless, and give hope to the young patients who are still dreaming. We asked the young men affected by Duchenne in our community about their career aspirations, and they did not disappoint. Learn more about them here.