BCD: Hi, I have been recently diagnosed with... - Macular Society

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BCD

GC_0007
GC_0007

Hi,

I have been recently diagnosed with Bietti Crystalline Dystrophy. I have been getting intravenous avastin in both eyes for wet macular degeneration since 11 years (when needed). But my diagnosis is relatively recent. I personally have neither met or known anyone with BCD and wanted to see if anyone out here has knowledge of the disease, progression / what to expect (more than whats written about it online).

5 Replies

No-one's answered which is unusual. Sorry to say I can't help either. It may be an obvious answer though: have you googled and contacted the macular Society who may be able to point you in the right direction? Good luck xx

Rosalyn-helpline
Rosalyn-helplineAdministrator

Dear GC_0007,

I have contacted our Research department to see if they can locate any information on BCD for you.

Please email:

help@macularsociety.org

also quoting your Health Unlocked name and I will let you know the outcome.

Kind regards,

Rosalyn

Macular Society Advice and Information Service

Hello GC,Having just been diagnosed myself with wet macular degeneration only about a month ago, I can offer my compassion for your new diagnosis and some of the emotions which can accompany that. I, unfortunately, don’t, however, have any familiarity with your BCD diagnosis and my Avastin experience has just been one eye injection, not a intravenous receipt of the medication. I am in the US and we do have an organization here called NORD, which stands for the National Organization for Rare Disorders. Not sure whether they will have any information for you but, if not, perhaps they could provide you with a referral.

With sincere best wishes for positive progress,

Riverpipes

Thanks for all the responses. I have not reached out to macular society and am going to send an email today.I have done a bit of research(google) myself on BCD and Stargardts(which was doctors first hunch of what i may have before they concluded it is BCD).

I just wanted to connect with someone who has experience with or more knowledge on BCD.

This is a rare disease and there is comparatively less research done on it. Sometimes simple lifestyle and dietary changes can be game changers. The more i connect with people who have experience with this, more i can find out about it and perhaps learn about simple modifications i can make to delay the progression if not cure it.

I do hope you manage to get in touch with someone. All the best! xx

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