The Rare Disease effect
Having a rare disease is not something that everyone can understand.
Oftentimes, the majority of people who don't understand how life changes after having a rare diagnosis diagnosis, back away.
I had many people in my life do this.
I call this the Rare Disease effect because a person's health is not the only aspect of their life that changes, It not only affects the patient but those around the patient as well.
Has anyone else experienced this?
Yes, I learned quickly who is really a true friend after being diagnosed. Most people can’t handle our new reality.. it’s really hard to accept that some people are only interested in the old me.
@AveryAllmond I think many of us can relate to the "Rare Disease Effect." I lost a few friends, but made many more, especially online friends. I don't know if you've already seen this article, but it goes a little into changing family dynamics following a rare disease diagnosis https://neuromyelitis-optica.net/living/family-impact And don't forget, we're all here for you, and we get it <3 Helen (team member)
yes such a good resource to use! We all go through it to some extent! What's something that helped you through this?
My life has changed significantly since my diagnosis. I have to constantly modify.
I modify daily I learned that making plans is not possible , I usually go day by day with how I feel
For me nmo diagnosed in 2022. I was really healthy but I had mood swings always. I was unhappy mostly. I had a very sudden vomiting and then I had vision problems and I lost the ability to walk . One neurologist diagnosed as stroke after taking mri. We took a second opinion. And finally I entered into the new world with nmo. I am taking treatment periodically. Now I am not healthy but I am very happy. Rest of the life of mine is a bonus for me. I m happily living
hi..I'm new to this as my son has suddenly been stricken with nmo. I'm heartened to hear you are enjoying your life and I suppose I am looking for confirmation that the paralysis he is experiencing can be reversed . The doctors don't know as its early days in his treatment but it helped hearing your story and has given me some hope.
Take care and all the best for your future
Bribabshi there! I hope you were able to find some sort of resolution to all of the symptoms you have. Please keep us updated and let us know if we can help with resources in any way
