MDI’s Counselling and Information Advocacy service formed a key part of the support Claire Ellis received after her diagnosis

Claire Ellis

My name is Claire and I was diagnosed with the extremely rare, miyoshi distal myopathy last year. Needless to say it came as a shock initially, but then the range of emotions from fear, disbelief, anger, sadness, and especially the isolation of such a diagnosis, felt overwhelming. None of the medical professionals I spoke to around that time had ever heard of my type of MD, and as a single woman in her forties, this further compounded my isolation and distress. 

One amazing GP suggested I get in touch with MDI to see if they could provide any information to me, and honestly, they were my savior's. It’s very hard to write this, and to not get emotional thinking back to that dark time in my life, but MDI were a beacon of light to me in a very difficult period, and they continue to be so.  

The first call I made, I just sobbed down the phone and the lovely woman I spoke to, suggested I sign up for some counselling, to help me process my diagnosis. Every interaction I have had with MDI since, including those counselling sessions, has genuinely helped me more than you could ever realise. Just knowing that such a support and service is in place for patients and families dealing with MD is truly lifesaving. I can’t thank MDI enough for all that they do, they are an invaluable resource to this country.”