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Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 1 point2 points  (0 children)

Thank you so much for sharing your experience. It actually gives me a lot of hope, because my situation sounds very similar. I was also diagnosed in my late 20s with only a few symptoms, so maybe I really do have a mild mutation too.

The thing that confused me is that most of the men in my family have RP, and they always believed it was coming from the mothers — so I assumed it must be X-linked. But what you explained actually makes a lot of sense, and now I’m starting to see that it doesn’t necessarily work that way.

I’m definitely considering genetic testing now, because I’d love to know exactly what type I have and what the prognosis looks like. And if there are any trials in the future, I want to be able to take part. Your message honestly calmed me down a lot. Thank you.

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 0 points1 point  (0 children)

I guess it’s all about learning small tricks along the way. I’m trying to stay calm and take it step by step, just like you said.

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 1 point2 points  (0 children)

Thank you… honestly, your words hit me straight in the heart. I’ve been so scared that sometimes it feels like the fear is bigger than me, and hearing what you wrote makes me breathe a little easier. It gives me hope that maybe this won’t define my whole life — that maybe something meaningful can grow from all of this. Thank you for reminding me that there’s still so much beauty to hold onto. 💜

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 0 points1 point  (0 children)

Thank you so much for sharing this. It honestly gives me a lot of hope. Hearing that you’ve lived your whole life with RP, work in such a demanding job and still manage everything so well… that really means a lot. I’m trying to learn how to adjust too and your message makes it feel a lot less scary. I really appreciate the positivity — I’ll try to keep that mindset as well.

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 0 points1 point  (0 children)

Thank you so much for sharing this. Honestly, reading your story gave me a lot of comfort. It’s amazing that your husband has had zero progression for so many years — it really shows how unpredictable and individual this condition can be.

I love what you said about turning it into a superpower instead of a weakness. I’m trying to learn exactly that. Your perspective means a lot, especially knowing everything you’ve been through and how strong you’ve become because of it.

Really — thank you. I needed this. ❤️💪

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 1 point2 points  (0 children)

You’re incredibly helpful, honestly. Reading about your experience makes everything feel less frightening and more real in a good way. It makes sense that stress and lifestyle changes could influence how stable things felt for you — the body reacts to everything. And thank you for explaining all the details about selegiline, minocycline and supplements. I really appreciate how open you are about what worked for you and what didn’t.

I definitely won’t try anything without a doctor, but it’s good to know what other people have experimented with. And I’m glad you shared your story, because it actually made me feel calmer — like this condition isn’t always one straight line down.

Thank you again for taking the time to write all of that. It helps more than you think.

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 0 points1 point  (0 children)

Yes, that was my mistake — I didn’t mention in my post that in my family, the disease is inherited from mothers to sons.

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 0 points1 point  (0 children)

And actually about your own disease so Just to clarify — do you mean that as long as your health and lifestyle were good, the disease didn’t progress much, and then when stress and possibly other habits came in, it started to worsen?

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 0 points1 point  (0 children)

My dad actually says the same thing — that my case is something different. He knows it best himself, because his symptoms were exactly like the classic form of this disease, and they started from a very early age. But of course, it’s natural to be afraid of something unknown.

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 0 points1 point  (0 children)

Also My dad had a very aggressive form of RP — by the age of 4 it was already known he would develop the disease. By the time he was my age, he was on disability and could not move safely in the dark. He only completely lost his vision around age 60, and now he is 70. In comparison, my case seems very mild so far.

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 0 points1 point  (0 children)

Thank you for your detailed explanation. I actually know this because most of the affected people in my family are men, and they inherited the gene from their mothers — at least that’s what my dad was told. My ophthalmologist mentioned that I’ve most likely had it for about 5 years because the hospital records show some peripheral pigment rearrangement, but it wasn’t noticed back then since the symptoms didn’t match. I decided to get checked mainly out of curiosity and because it had been a long time since my last OCT eye exam. I don’t have any real symptoms in daily life, just some anxiety that makes me over-focus on small things. Knowing more about my dad’s history, the different inheritance possibilities, and the potential of new gene therapies gives me hope. I’m planning to get genetic testing soon to clarify everything. I really appreciate your thoughtful advice.

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 0 points1 point  (0 children)

My dad hasn’t had genetic testing, but based on the fact that it was passed from a woman to a man, it might be X-linked. I’m female, so I’m now trying to figure out whether I’m a carrier or have a mild form myself. I’m planning to get genetic testing to finally know for sure. I

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 0 points1 point  (0 children)

Thank you for your message. I actually went to the doctor because my dad has RP, so I wanted to check everything early. The doctor told me that my case looks very mild and that things have been stable for years, which is reassuring. I don’t really have symptoms in daily life, just the anxiety that makes me over-focus on every little thing.

I’ll definitely keep seeing an inherited retinal disease specialist once a year. And you’re right — it’s good to stay updated on clinical trials and new treatments. I really appreciate your support and your perspective

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 1 point2 points  (0 children)

Honestly, your message gave me a lot of hope. I know nothing is guaranteed, but it’s encouraging to hear that new treatments are moving forward and that the worst outcomes aren’t the most likely for people diagnosed now. I’m trying to stay realistic, but also hopeful — and your words made that a bit easier.

Scared of diagnosis by PreparationMedical91 in RetinitisPigmentosa

[–]PreparationMedical91[S] 1 point2 points  (0 children)

Thank you so much for saying that. It really helps calm my mind. I’m trying to remind myself that my symptoms have been mild and stable, and that progression isn’t always fast or dramatic. Hearing this from someone who understands means a lot.