Genetic Testing - the waiting game!

[CARLYMCK]

Hello all, I am 36 and waiting for results of a genetic test to find out what type of macular dystrophy I have, it means I have to wait nearly a year to find out. in the meantime i am really confused, I want answers like "what will I be able to see, how long it will take, can i still drive and work with computers" etc etc but searching the internet is even more confusing. I don't even know if i'm writing this to get answers because from what i can gather noone is the same. I would love to hear peoples experiences, I was thinking maybe hearing stories from people who are coping with it, and how it affecting their lives may help.

Thank you

Carly

[Becky_MacularSociety Partner]

Dear CARLYMCK

Just to make you aware, we do have a working age and young person's service, please see below:

macularsociety.org/working-...

We also have a new facebook group for young people with dystrophys, run by our WAYPM Colin Daniels where we have lots of members share their experiences etc.:

facebook.com/groups/2516963...

Please contact us if you would like to discuss any concerns further.

Best Wishes,

Becky

Macular Society

Advice and Information

[e-mail]

0300 3030 111

[CARLYMCK in reply to Becky_MacularSociety]

thank you

[Bunny1756 in reply to Becky_MacularSociety]

Hi Becky,

Is there a way to post something to everyone here? The information is very important!

Many thanks,

Bunny

[Becky_MacularSociety Partner in reply to Bunny1756]

Hi Bunny,

You can create posts by clicking the blue "write" button along the top of the screen

Thanks,

Becky

Macular Society

Advice and Information

[e-mail]

0300 3030 111

[Bunny1756 in reply to Becky_MacularSociety]

Becky,

I do not see a “write button” on the top if the screen, I have some very important information I would like everyone to see.

Thank you,

Bunny

[Becky_MacularSociety Partner in reply to Bunny1756]

Hi Bunny,

Make sure you are in the macular society community, rather than just viewing the home screen which will show all communities you follow, along the top, click the button with the 9 little dots (called "My hub") and select "macular society" the "Write button" should then be along the top of the screen

Thanks,

Becky

Macular Society

Advice and Information

[e-mail]

0300 3030 111

[Bunny1756 in reply to Becky_MacularSociety]

Becky,

I see the “write button” on the side. But I am limited to 140 characters there. This information is much longer. I want everyone to see it.

Bunny

[Becky_MacularSociety Partner in reply to Bunny1756]

140 characters is for the title of your post, you can insert a much larger body of text in the bigger space where it states "write you post here"

[Bunny1756 in reply to Becky_MacularSociety]

Becky,,

I see it, I will work to get the details there.

Thank you,

Bunny

[Bunny1756]

Hi Carly,

I am so sorry for your difficulties. I never realized how many others have these problems. If you have not already done this, go to webmd.com and type in macular dystrophy. There is a good explanation there that is not too lengthy or complicated. It appears to take a while to obtain the answers to genetic disorders. There also does not appear to be definitive answers to the condition or the timeline for changes or progression. No one has the “crystal ball,” to predict these things. I located a panel review of medical professionals on the internet a while ago. One of the doctors stated point blank, in response to several of the major injection eye therapies currently available, “We are just beginning and we have a long way to go.” You are correct in your observation everyone is different. There are so many factors that effect these conditions. For this reason, science does not have cures or the answers for so many illnesses. I hope you can be helped.

Bunny1756