28/02/2026
28th of February is Rare Disease Day. My rare disease superhero is definitely my husband, Jono, who went and found himself a disease about as rare as you get. Anti Iglon5.
Anti Iglon5 is a very rare, progressive neuro-autoimmune disorder in which antibodies within the body attack its own neurological system through the Iglon5 protein. The disease presents with sleep disorders, swallowing/speaking dysfunction, movement disorders and loss of muscle tone and coordination.
While some people might shrug their shoulders and just give up, not Jono. In his words "this disease picked the wrong bloke". Jono has faced treatment like a champion, even when it takes 5 attempts to cannulate 😳 and he has begun a daily workout routine to keep his muscles working.
Everyone who knows him will know, everything he does he will do it at 100%.
I would also like to take the opportunity to thank the family and friends who have supported us through this journey. There are way to many of you to name. We truly are blessed to have you all in our corner 🥰
Best wishes to all
Emma
