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Hi, my name is LiSwati! looking for support group for people with Sector RP

LiSwati

Diagnosed today with Sector Retinitis Pigmentosa (RP). I was told it is a lesser form of RP, but that it needed to be reassessed after 6 months.

When I learnt I was diabetic, in Sep 2022, I joined a forum called ‘Diabetes Forum UK’, which continues to be an excellent source of advice from people experienced with what I am going through, which has had great success on my diabetes management.

Your community appears to provide similar support and I hope you have a discussion group for members with Sector RP. I thank you for the opportunity to join your community.

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Mary_Scope

Hi @LiSwati and a warm welcome to the community from me!

Thank you for telling us a little bit about yourself, how are you feeling at the moment?

It's lovely to have you here and I hope you enjoy your time on the community😊 We're a friendly bunch so please reach out if you need any information, advice or support!

LiSwati

https://forum.scope.org.uk/discussion/comment/1066475#Comment_1066475

Thank you @Bluebell21. I am totally cool with my diagnosis, as I am grateful to have the lesser form of RP. I have worse medical issues and I have come to terms with them and have accepted them as part of my life.

In most cases, we can’t change what we have but we can change our lifestyles; which in many cases, can help us maintain or reduce the depression, for example diabetes. Unfortunately my eye condition can neither be reversed nor maintained, as it will continue to degrade over time. I am however fortunate, in that my RP (Sector RP) is a rarer type of RP, with a slower degradation rate.

My doctor said I likely have had it for many years and that it should be manageable for many more years to come. I just have to immediately avoid night driving (which was why I had my eyes checked by the specialist, as I was experiencing difficulties driving at night).

Thanks again. Hoping I will find a group / forum with individuals with Sector RP or RP.

LiSwati

https://forum.scope.org.uk/discussion/comment/1066575#Comment_1066575

Thank you @Mary_Scope. Your welcome is appreciated.

I am looking for a forum or group for people with Retinitis Pigmentaso (RP). Are you able to direct me to such a forum / group?

Albus_Alumni

Hey there @LiSwati and welcome to the community from me too. 😊

I've had a quick google and found two groups which may be of interest?

Retinitis Pigmentosa Support Group (The RP Family Group )

and Retina UK who would be a lot more equipped to nudge you to the right places. 😁

LiSwati

https://forum.scope.org.uk/discussion/comment/1066921#Comment_1066921

Hello all. @Albus_Scope, thank you. This is truly helpful. I will reach out to those groups.

Sincerely, LiSwati

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