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Retinitis Pigmentosa

(9 Posts)
Jenda Wed 26-Feb-14 15:57:40

Postedin chat but been sensibly advised to repost here.

Can’t talk about this to many people in RL so thought I would try here!
 DP failed his peripheral vision test last time he went for an eye check up (just a standard on). He was referred to the hospital and had his appointment on Monday. The ophthalmologist told him his retinas are extremely thin and that he wasn’t able to tell him what was wrong and he would need to see a specialist. He said he had rarely seen anything like it and seems to suspect it might be Retinitis Pigmentosa.  DP also has night blindness which is a classic symptom.

I have done a lot of research into RP and I know I should have stayed away from the internet but it really is seeming like it is the only thing It could be. If DP fails the peripheral test on his next appointment he will lose his driving licence which he is gutted about. I am absolutely terrified.

I am maintaining a very upbeat and positive vibe at home but today at work I am really struggling to keep it together. I’ve read so many things to say that many people with this are legally blind by 40, that gives him 10 years. We haven’t had children yet and DP said his immediate thought was that we wouldn’t be able to drive his children to birthday parties at the weekend! I feel total panic like I need to marry him and have a baby immediately while he still has vision.  Also, if it is a genetic condition then we need to seriously consider whether we would be cruel to bring children into the world knowing they might go blind. So much to think about. 
I don’t drive so am booking an intensive driving course for next month. DP is doing this “eye yoga” thing which is supposed to help improve peripheral vision and I have ordered him vitamin A tablets because that is supposed to help with Retina function. We have 4-6 weeks to wait for the appointment and I feel like I am going to scratch all my skin of in despair!
DP is pretending he is OK and just getting on with trying to train his eyes but I know he is trying to be brave and I feel awful for him. 

Does anyone have any experience of the condition who could talk to me, or maybe just a hand to hold?  I am so sorry if any of this is insensitive to any sufferers, I don’t mean any offence I am just in shock and a bit hysterical! I feel silly being so upset when we haven’t had the diagnosis confirmed and I am so sorry if I seem melodramatic, I’m just bloody scared

Sorry for dodgy formatting, having issues with the app! smile

magimedi Wed 26-Feb-14 16:24:58

Just popped over to bump this for you!

NK346f2849X127d8bca260 Wed 26-Feb-14 19:09:59

My cousin has this, and it started affecting him badly from his early twenties, but he works and leads a normal life.

The type they have is the X linked inherietance one.

His sister is not affected and neither are her 2 sons.

Sorry to hear you are going through this and hope you get some answers soon.

NK346f2849X127d8bca260 Wed 26-Feb-14 19:13:48

Also have a look at the RNIB website it looks quite informative and they have a helpline.

I can contact my cousin if you have any questions.

Jenda Wed 26-Feb-14 19:24:16

Thanks magimedi thanks

Jenda Wed 26-Feb-14 19:28:57

Hi NK thank you very much for that. I have devoured RNIB and will definitely contact them if the diagnosis is what we think it is, would feel like I was wasting their time until we have the facts.

If it is RP I would love if it you could contact your cousin. If my DP could talk to someone who is living with it I think it would be helpful. I really appreciate the thought, thank you so much

Just been stocking up on oily fish and vitamin a in the vain hope it will help. DP pointed out that we might get a labrador out of this, good to maintain a sense of humour I guess grin

magimedi Wed 26-Feb-14 22:19:17

Bump - for late night traffic!

Jenda Wed 26-Feb-14 22:42:50

Thank you. Dp just did an online peripheral vision test. The one where you focus on an icon on the screen and click when other dots appear. He didn't see any of the black dots which were very obvious to me. He is sure he is going to lose his licence but doesn't seem to be thinking about deterioration beyond that. I meanwhile have had to sneak off and quietly vomit my dinner up, feel distraught but being positive to him

Dizzybintess Thu 11-Aug-16 22:49:15

My brother has this and if you want any support I'm happy to help

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