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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?

  1. 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.

    1. @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)

      1. yes such a good resource to use! We all go through it to some extent! What's something that helped you through this?

    2. My life has changed significantly since my diagnosis. I have to constantly modify.

      1. 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

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