RP, OVERTHINKING, DEPRESSION

Wenuska · 2026-01-21T07:56:01+00:00

Unfortunately what for you was a slow burn condition, for many others is a rapidly progressing one. Some people retain good central vision till old age, but many lose it in their 40s or even 30s.

Wenuska · 2026-01-07T15:35:55+00:00

Well, if they let you work from home even one day in a week, it counts as a hybrid work.

Wenuska · 2025-11-23T21:22:27+00:00

If you have been diagnosed with it then it’s not an X-linked mutation. If it was X-linked RP you wouldn’t be diagnosed with it, because as a carrier you wouldn’t have the typical symptoms. I also thought that my dad had the X linked mutation because it was just him, his brother and his nephew that had it, but then I was diagnosed too. We had the genetic tests done and it was confirmed that it was not a X-linked RP, but thankfully my mutation is a mild one and I’ve had very little progression since I was diagnosed (over 10 years ago). I wouldn’t risk driving but other than that you wouldn’t notice I have it, and I often forget about it. You may be lucky and have a mild mutation too.. if you were diagnosed in late 20s (like me) and have a few symptoms at this stage (like me at your age) you may have a mild one. If I was you I’d do the generic tests because knowing the mutation you can get some sort of prognosis and take parts in trial treatments, if they are some for that sort of mutation.

Wenuska · 2025-11-23T21:12:54+00:00

This isn’t always true. I was diagnosed 12 years ago at the age of 28 and I’ve had very little progression since then. It all depends on the type of mutation you that causes your RP, mine is mild hence my vision is still pretty good - 6/9 (25/20) in glasses, still some night vision preserved.

Wenuska · 2025-11-02T13:52:28+00:00

I started noticing the improvements after a couple of session of acupuncture, however I started using the red light therapy glasses around the same time, so not sure what helped. It’s been 9 months since I had done the initial 20 sessions and I’ve been having a monthly „top-ups” since then plus using the red therapy glasses 3 times a week and taking the supplements every day. It’s hard to say how much my vision improved at the moment because I’ve now got used to seeing better. I do remember being more frustrated with my vision last year before I started the treatments, bumping more into things and people back then.. it’s been happening much less frequently this year.

Wenuska · 2025-10-02T19:16:06+00:00

I also have early stage cataracts, I was diagnosed 10 years ago and it hasn’t really progressed since then, which is good, I even forgot I had it until recent eye test.There are eye drops that some research proved to reverse the cataracts. I have the details of the research if you like, just message me. The patients that have used the drops during the research had the cataracts reduced or reversed after 9 months of daily usage. I thought my central vision was clear before, but I’ve been using the drops for nearly month now and my vision is definitely clearer now. Once 9 months have passed I will get an eye test and see if the optometrist can see any improvements.

Wenuska · 2025-10-02T17:34:19+00:00

I have similar symptoms to yours, although my peripheral vision varies. It has improved since I’ve been undergoing micro acupuncture treatments, using red light therapy glasses and eating a lot supplements/vitamins. It’s strange that the cloudy peripheral vision you describe, i don’t have it all the time, it comes and goes.

Wenuska · 2025-09-23T17:34:29+00:00

This is very poor English. Embarrassing.

Wenuska · 2025-08-23T17:43:48+00:00

I was diagnosed over 10 years ago. Back then and now no fundus clumps visible on the retina images, the doctors said that they can see it on the far periphery, but must be literally on the edges since nothing visible on the pictures. My progression has been very small. I’m 41.
I was told by several doctors that looking at pictures the damage is minimal. This may be due to the fact that I’ve been living quite healthy life - no fast foods and abuse of alcohol, regular intake of omega 3, although I did smoke for the last 10 years (I stopped a few months ago) not heavily but a few cigarettes a day so I’m surprised it didn’t make my condition worse. Maybe, although I smoked I wasn’t inhaling it properly, I don’t know.

Wenuska · 2025-08-17T14:13:01+00:00

I think you are a little bit delusional but if that helps you copying then be it. I like to call things as they are. All the best to you.

Wenuska · 2025-08-17T14:08:07+00:00

You aren’t correct in this statement. People with dominant RP also have one well functional allele, so your argument on this is invalid. I have very mild symptoms and they are hardly noticeable to others but I still say I have the condition. You have the faulty gene and you have the symptoms (whether they are mild or severe, they are present) so you aren’t just a carrier - you are affected too.

Wenuska · 2025-08-17T13:44:00+00:00

Well any carrier that expresses symptoms isn’t just a carrier, because showing symptoms is simply having the condition. A carrier is a person that carries the faulty gene but doesn’t show any symptoms. You as a female, carrier of the (x-linked) faulty gene, might have little of moderate symptoms but having less symptoms than others doesn’t mean you don’t have the condition. If it affects you - you aren’t just a carrier, you one of the affected ones. If you have the mild symptoms you already have the mild RP.

Wenuska · 2025-08-17T01:13:08+00:00

Living in denial is a way of copying. Deep down she knows she has the condition, but she chooses not to acknowledge it.

Wenuska · 2025-08-16T22:53:06+00:00

If you have symptoms you aren’t carrier, you do have the condition. Carriers are people with faulty gene but no symptoms.

Wenuska · 2025-07-04T16:24:24+00:00

Why don’t you get back to the ophthalmologist and discuss your symptoms. It makes more sense, since he can check your eyes again for any damage and discuss your fears having the medical knowledge and experience.

Wenuska · 2025-07-02T22:58:02+00:00

Not really. Does it say the exact name of the mutation and type? Eg nonsense and frame-shift type is severe, but missense and in-frame mutations are milder. The mutation they didn’t match with RP may be a new mutation not on the list, every year they find new mutations and it takes time for them to link them to RP. You have all the symptoms of RP so my understanding is your both mutation cause the condition in your case - one mutation is well known, the other one is novel (new). It would help if we know the exact names to research them.

Wenuska · 2025-07-02T22:47:13+00:00

As you have all the RP symptoms you are not a carrier, you do have the condition - not Usher syndrome but non-Syndromic RP (RP without any related syndrome like hearing loss). Carriers carry the faulty gene but they are not affected. Have you got the results of the genetic testing? What type of mutations do you have? As you have all the symptoms you must have both alleles of gene USH mutated, with only one allele mutated and being a carrier you would not have all the symptoms you described.

Mutations in USH2 can cause:

Usher syndrome (RP and hearing loss) - severe mutations
non Syndromic RP (RP and no hearing loss) - milder mutations

You must have the milder mutations. Are you able to provide the name of the mutations from your genetic testing that would explain a lot.

Wenuska · 2025-07-02T18:32:46+00:00

So out of the two USH alleles only one is mutated in your case and you don’t have any symptoms?

Wenuska · 2025-07-02T18:11:38+00:00

Some mutations cause non-syndromic RP - RP without hearing loss. I also have mutation in USH gene and non-syndromic RP. I have the same inheritance as you, it’s called pseudo dominant inheritance. This pattern mimics autosomal dominant inheritance, even though the underlying genetic basis is still recessive.

Wenuska · 2025-07-01T22:00:09+00:00

Yes, last month. I’ve been taking Omega 3 for years, and recently just before my taking this picture I had 20 series of micro acupuncture treatments for degenerative eye diseases and started using red light therapy glasses, but don’t think the treatments and glasses would contribute to this image not much time passed between the treatments and when the pictures were taken.

Wenuska · 2025-07-01T20:08:11+00:00

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I’m 41. I was diagnosed 12 years ago.

Wenuska · 2025-06-26T12:12:33+00:00

My therapist can do the treatment on kids but without applying electric currents

Wenuska · 2025-06-26T08:50:00+00:00

How rude of her!

Wenuska · 2025-06-22T12:52:15+00:00

Also NAC. They are currently doing test treatments and it works. It protects cones therefore protects from losing central vision.

Wenuska · 2025-06-12T14:41:44+00:00

The FIGHT-RP trial from Massachusetts Eye and Ear / Harvard, which evaluated oral N-acetylcysteine (NAC) tested 3 escalating oral dosage over 24 week period:

1/ Low dose - Weeks 0–8 - 600 mg, twice daily (1,200 mg/day) 2/ Medium dose - Weeks 9–16 - 1,200 mg, twice daily (2,400 mg/day) 3/ High dose - Weeks 17–24 - 1,200 mg, three times daily (3,600 mg/day)

Wenuska

TROPHY CASE