Connecting through Sharing Stories during SRNA’s Rare Disease Month
We’re a little over halfway through SRNA’s Rare Disease Month! Throughout February, we are spreading awareness of rare neuroimmune disorders and the challenges that come with being diagnosed with a rare disease. We asked members of the SRNA community to share how their diagnosis has impacted them, what challenges they have faced, and how they feel encouraged or supported. You can read some of their responses below.
“There have been so many challenges of varying degrees. Because AFM is so rare and not known, there have been many challenges related to getting insurance approvals, needing to jump extra hurdles with letters of medical necessity, routine assessments, etc. There is often the need to share her journey with doctors, therapists, insurance companies, etc. in order to get her the proper care and resources. Also, one of our challenges as she has gotten bigger is how to help her integrate into life with peers and others in different environments. Initially, with a tracheostomy, caretaking itself was a huge challenge – it was demanding and tiring. And trying to help her brother and sister learn how to have conversations with their peers and others about their sister’s diagnosis and how it has impacted their sister’s life and abilities has been a challenging process.”
– Gretchen Trimble, mother of Opal, AFM
“The most difficult thing for me has been learning to accept that this is my new normal. I have learned that making the best of each day is the best coping method for me. I am incredibly fortunate to have an amazing husband who makes me laugh each day and is right by my side, ready to help me with anything. I am also truly blessed with a very supportive family and medical team. The biggest challenge is although I can walk and do many things, people cannot see the internal damage that TM has done and continues to do. Simple tasks are difficult (cannot dress without help or even wash my hair) as well the pain and exhaustion levels that never end. I do realize how much worse it really could have been, so for that I am grateful. Staying positive can be a challenge, but the alternative is not going to help anyone. I am very encouraged by the good work that SNRA is doing on behalf of people who have been affected by these rare disorders.”
– Nancy Warner, TM
“My NMO diagnosis has completely changed my life. At the moment, I cannot walk due to weakness in my legs, and I have gone from being completely independent to having to rely on others for almost everything. I have learned that I am not as mentally strong as I thought. My family and friends have been my support. They continue to encourage me.”
– Susan Smith, NMOSD
“Even though Luke is rare, there are still many people who are just like him, and he is not alone!”
– Caitlyn Rester, mother of Luke, MOGAD
In the coming weeks and months, we will continue sharing stories and information to increase awareness about rare neuroimmune conditions. Also, there is still time to register for our SRNA Rare Disease Day Support Group Meeting and to get involved with our Rare Do Care Walk-Run-N-Roll! Another way to join in on Rare Disease Month is by sharing how a rare neuroimmune diagnosis has impacted you by filling out this form. Follow along on our social media platforms – Facebook, Instagram, and Twitter – where we are posting information and stories throughout the month. Help us by sharing our posts and raising awareness of these disorders.
