Living with Retinitis Pigmentosa: Support and Advice

Hey there,

Does anyone else here deal with retinitis pigmentosa? It's this hereditary eye condition I'm fighting, and I was wondering if anyone has actually tried acupuncture treatments over in Seattle for it. If not, does anyone have other methods that actually work? Alternative therapies, anything at all—please share. I’d really appreciate the help since I'm going through this myself.

Thanks!

I wouldn't waste any money on things like that.
Given that we're talking about genetics, there's just no proof for it, and it seems quite impossible.
I suppose you should probably just go for an annual retinal exam and maybe get an OCT scan, if only to make sure you haven't developed cystoid macular edema in the center.
As for the other symptoms—things like a narrow field of vision or poor night vision, since the cone cells have replaced the rods—there isn't much you can really do about those.

If you happen to be a college student, I believe you're entitled to an electronic magnifier and whatever other accommodations come with being legally blind.

It’s not easy, but unfortunately, there aren't any significant new therapies available right now.

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Thanks for the reply, but I can't stand it when people flat-out call something stupid just because they think their own interpretation of the facts is the only truth. I work in the medical field, so I know exactly what a genetic disorder entails and the implications of missing proteins in cellular metabolism. Acupuncture is actually recognized by mainstream medicine. If you had bothered to look deeper, you’d realize vision loss happens long before photoreceptors actually die. By ensuring adequate ocular perfusion, you can potentially maintain sight and support cone function—since cones don't carry the mutation and are responsible for central vision. I personally know someone dealing with this exact condition who tried a specialized Boeing acupuncture technique, and their vision actually improved. That’s supposed to be "impossible" since the disease is progressive. It doesn't mean the disease stopped, but slowing it down and increasing blood flow to rods suffering from hypoxia? That is a real result.
So, before you try to crush the will of someone who is actively seeking help—help that might actually work while they wait for a definitive cure—think twice. Try providing helpful information using a neutral tone instead.

Anyway, I’m still waiting for an answer to my question if anyone actually has one.

I’m shifting focus toward this thread instead; it might actually be worth our time.

Is there any objective data showing actual improvement in vision?
Does the ERG report look better? Are there measurable responses from the rods and cones?

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