Ryan Lochte may be having some PR problems right now
but we in the rare disease community appreciate all Ryan has done to raise awareness about Duchenne muscular dystrophy.
Ryan has been a spokesperson
for Parent Project Muscular Dystrophy (PPMD) since the 2008 Beijing Olympics and has spoken in Washington passionately about the charity’s work, including the reauthorization of the MD-CARE Act.
Ryan lost his uncle to Duchenne and once learning about PPMD, he ‘plunged’ in to help in anyway he could.
In a press release
from 2013, Ryan said:
"When I was introduced to Parent Project Muscular Dystrophy and the Duchenne community in 2008, I was amazed by the passion and strength of this incredible community. I personally have received so much support from these families as swimming is one of the only physical activities Duchenne patients can participate in. If my presence in Washington can bring a little more attention to the reauthorization of the MD-CARE Act, then it's the least I can do for the Duchenne community. I do this in memory of my uncle."
Currently, Ryan is making news not for his charity work or swimming abilities but due to the confusion over what happened in Rio early Sunday morning when it is alleged that he and 3 other US swimmers were robbed at gunpoint.
While Ryan is currently back in the US, 2 of the swimmers have been detained in Rio for questioning to determine the specifics of the robbery. At present, Rio law officials have been unable to substantiate the claims made by Lochte and the other swimmers about the robbery.
Duchenne Muscular Dystrophy
Duchenne muscular dystrophy (DMD) is caused by lack of a functional dystrophin protein, a protein that helps keep muscle cells intact. Patients with progressive muscle disorder experience symptoms in early childhood, losing the ability to walk as early as age 10. These patients, mostly boys, experience life-threatening heart and lung complications in their late teens and twenties.
There are many subsets of the DMD population based on the type of mutation found in the dystrophin gene. There are currently no drugs approved in the US to directly treat any of these groups, although Sarepta’s eteplirsen in under review by the FDA.
Standard treatment for DMD patients is the use of a glucocorticoid to improve muscle strength and function. As stated earlier, long term use of glucocorticoids has side effects that impinge on a patients quality of life (weight gain, puffy face, increased risk of diabetes etc) making it imperative that safer glucocorticoids be made available.