Benign Concentric Annular Macular Dystrophy???

[Bella80]

I am 36 and have been recently diagnosed with BCAMD. The experts know very little about this condition, but would be interested in hearing from anybody else with it. The main symptom is that my eyes don't like light, so I wear prescription varifocal dark glasses all the time, which makes me feel very different, but it helps me see "normally". Any information about what to expect going forward would be greatly appreciated xx

[rosyG]

sorry to hear you have this condition- I'm afraid I don't know about it but there are probably studies on the internet??

I expect everyone thinks you are famous and so wearing the glasses for anonymity so don't be self conscious about it Also lots of glasses- varifocals etc- change with the light so people are used to this.

[Ayayay80]

Hi Bella

Sorry I can't be of much help to you. All I know is that your condition is very rare and probably hereditary, but I guess you know that much yourself. For much of my life I too have been very sensitive to light, and night driving has always been a no-no for me. I just could not cope with the bright lights coming at me even though I tried not to look at them. I once mentioned this problem to my GP; he just laughed and did nothing. It did not seem worth investigating to him. I just wonder if your condition is more common than science is aware of, because some people (especially the younger ones) would not necessarily go to an optican while their eyesight is good and just wear sun glasses. Also, the medical equipment has improved enormously over the past 10 years so that the physical evidence of BCAMD is more easily detected.

I know, all this doesn't answer your question. There must be people out there who can enlighten you better. I just want to say, I feel for you and I wish you all the very best. xx

Do keep in touch for emotional support, if you need it (and for my own selfish reason as I would like to learn more about your condition).

ayayay

[marianS]

Dear Bella,

I am sorry to learn of your diagnosis with BCAMD – which I have not personally heard of before. We are not medical specialists, but are aware of “Juvenile Macular Dystrophies” which are rare inherited conditions – see our website for information:

macularsociety.org/sites/de...

Looking up your condition on the web I came across this link

omim.org/entry/153870

“Benign concentric annular macular dystrophy (BCAMD) is initially characterized by parafoveal hypopigmentation and good visual acuity, but progresses to a retinitis pigmentosa (RP)-like phenotype with a bull's eye configuration (van Lith-Verhoeven et al., 2004).”

You will see that Page 8 in our above leaflet mentions Bull’s Eye Maculopathy, and the quote indicates it may develop characteristics of retinitis pigmentosa.

Our information indicates how you can look after your eyes and outlines support you can get through the Macular Society.

You may be interested to read our Genetic Information factsheet on the website:

macularsociety.org/sites/de...

which has further links at the end, including a site that specialises on retinitis pigmentosa.

This links in with a Genetic information and Support Service, run by a Counsellor, and is available by referral if you ring our Helpline below.

We also have a fact sheet on Working Age impact, should you find you need this in the future, also via the Helpline only.

I wish you well for the future, and do contact us if you need anything further.

Regards

Macular Society Helpline

0300 3030 111 Monday – Friday 09.00 – 17.00

[Ashclaire]

Hi Bella,

Am so sorry to hear of your diagnosis. I am 32 and have had this diagnosis since I was 18. My problem is that I struggle to see detail. Therefore, facial recognition is terrible for me, as is reading small (normal size for everyone else!) fonts. I need to be very close to see things properly, and require all reading material to be blown up. I’m. Daly looking for info on this disease, it there is very little. It’s extremely frustrating! Would love to keep in touch so that we can share any info we may come across

Ash xx

[JessieDay in reply to Ashclaire]

Hi Ashley. I too have this diagnosis. I was told I was one of the very unlucky ones to experience for loss at 33. But then I was told I was luck because it went away and stayed that way until now. And here I am again. It can on during a mild case of covid.

[JessieDay]

Hi! I have this too. I was diagnosed at age 33. I am now 48 and experiencing it for the second time. The first impairment period back when diagnosed lasted about a month then got better. Despite knowing this could come, its scary.