My name is Jessica and I’m an RPV Patient Panelist who’s overcoming Kugelberg Welander disease
I have spinal muscular atrophy type 3, also known as Kugelberg Welander disease. I do patient surveys on Rare Patient Voice. And I really enjoy and appreciate the extra money a lot. Also, I find the questions very helpful. And they also are very detailed.
They really get to the bottom of every aspect of every kind of question you could try to think of. They are very thorough. Let’s just– yeah, thorough would be the good word. And asking every question you might have and answering– and getting your answer of what you think should work best for, like, drug treatments or whatever your condition may be.
Living with my spinal muscular atrophy type 3 day to day is a struggle. But you learn the easier ways to get by with the abilities you have. Hey, if you’re interested in doing Rare Patient Voice and have a rare disease or condition, then do it. It broadens your knowledge and also gets your voice out there for others to know, hey, this is working or this isn’t working. So it’s a great opportunity.