Newly Diagnosed : Anyone else diagnosed with... - Macular Society

Macular Society

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Newly Diagnosed


Anyone else diagnosed with Macular Vitelliform Dystrophy?

After being referred by my optician at a routine 2 yearly eye test, I was diagnosed with the above. It is a condition where I will probably lose my central vision over the next 10 - 15 years. It’s commonly known as BESTs if it’s diagnosed in children where there are treatments available, but nothing for adults.

Would love to hear from anyone else with this condition.

8 Replies

Sorry to hear this- Maybe there will be treatment being developed as, if they have something for children, it suggests they might be able to do something for adults?? Hope you are adjusting- hard to hear bad news

Cubbikins in reply to rosyG

Thank you x

Rosie102 in reply to Cubbikins

It is great Cubbikins you have support here and in the past l have rang the Helpline and it really did help being able to talk to someone. God Bless.

Cubbikins in reply to Rosie102

Thank you

Try to google it and you will find that is not true that you will probably lose your central vision. If is diagnosed in adults is less worrying.

Hi. I was initially diagnosed with Central Serous Retinopathy but have been referred last week to Electrophysiology for tests to determine whether it might be AVMD instead.

My underlying condition is CLL (Chronic Lymphocytic Leukaemia) so am wondering whether there is might be an autoimmune as well as genetic link there...

Cubbikins in reply to Lapo

Hi Lapo

I have recently been diagnosed with Limited Systemic Sclerosis as well as the AVMD early this year but I have been told there is no link between the two. As far as I am aware there is no genetic link in my family.

I had various tests at the Bristol Eye Hospital mostly in a blacked-out room after which the AVMD diagnosis was confirmed.

It would be interesting to find out if those diagnosed with AVMD also have an autoimmune disease.

Hope your tests go okay.

Lapo in reply to Cubbikins

Thanks. I shall know in a month's time.

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