Hello new members and old members,

This group in not very active, but in the past 6 months I have been contacted by about 6 new gyrate atrophy patients.  There was a facebook site a few years back, so I think that is how they found my name.  This site is not very active, but I would love to see active communication again.  I would think there would be a better way to communicate.  Does anyone have any ideas?

One family in Australia are training for a marathon to raise fund and awareness for GA.  Their daughter is 6 and just recently diagnosed.  Another family is going to Finland to see a genetic specialist.  

I would love for my daughter to start communicating to others with GA, but she is 20 and not willing to talk about GA with anyone at this point in her life.  

I would love to hear from everyone,

Missy

 

 

 

 

Hi Missy,

My son is now 25 and getting married in September -- I hear that Gene Therapy is very close for GA, few more years I hope. So for now, have your daughter continue with her diet and any protein supplement like Amino bites.

Amino Bites?  I haven't heard of those before.  We did not go to her geneticist this year.  She is kind of done with doctors.  This too will pass.  Please send me a link to the amino bites.

Thanks,

Missy

 

Hello, 

I have GA and would be willing to speak to your daughter if she is up to it. I am 35 and was diagnoised when I was around 12. I can definitely relate to being done with doctors and diets. To be honest, I still struggle with diet. I try to be vegeterian mostly but I am not following a strict diet or taking any supplements though I should be. I grew up in Boston and saw Dr Berson at Mass Eye and Ear. I have been living in San Francisco for 10 years and seeing Jaque Duncan at UCSF. I developed cataracts about 2 years ago but we are currently waiting until they progress further before having surgery. I got a sabbatical from my job last year and I am currently travelling in Latin America while I still can travel independently. I stopped driving at night due to vision loss but luckly still have pretty good central vision. 

Not sure best way to approach your daughther or get her more "motivated" so to speak. I still struggle with acceptance of my vision loss and acceptance is definitely a moving line. Some days are better than others. Too be honest, I like to think that GA made me appreciate life more because I know one day I might not be able to see the ocean, a sun rise, mountains, friends, family, etc and I try to appreciate life moments and take it all in. But that is also coupled with the thought if I am going to go blind whats the point of following the diet and I should just live my life to the fullest while I can and deal with "it" the blindness later. It can be a tough burden for sure but overall I am still pretty positive with life but struggle with following a strict diet. I share these personal thoughts to maybe help you understand what your daughter might be struggling with but we all deal with it differently and she could be in another space. I did see a vision loss therapist for a bit. It helped to vocalize some of my thoughts and concerns but since I can still do most things by myself I decided to stop and maybe if my vision gets worst I would go back. 

I think you added me on facebook but here is my email if you or anyone else wants to connect. seanmcgaugheyis@gmail.com

Interesting about the marathon, I am training for a half marathon in Colombia and thinking about doing the boston marathon in April. My dad ran it a few years back and raised money for boston mass eye and ear hospital but it would be awesome to find a GA specific doctor or fund that we could raise money for directly. 

Hope all have a great day. 

Sean McGaughey

Sean,

Thanks for the note.  I know the diet is hard.  I try not to push, but it is hard to see her struggle with energy levels and I believe if she took the EAA suppliment she would feel better.  She has been vegetarian for about 5 years. 

i remember chatting with you via email when Rachel was first diagnosed.  I will give her your email and if she decides to contact you than great.  I have ran a few marathons in my younger years for luekemia research and the cystic fibrosis.  I would love to start a fundraising group just for GA.  

I lady from Potland Oregon just contacted me.  She was original diagnosed with a different eye disorder.  She will be traveling to visit with Dr Valle in the fall.  Hopefuly, i will be able to go up and meet her.

Have fun traveling the world.  

Missy

 

Hi Missy, 

I have not logged in here for a while and maily because this group has not been very active. I am 38 years old and was diagnosed when I was 14. If you or your daughter would like to talk, I can try to find some time. I can share my diet regiments if you would like. I struggle from time to time, especially having a family and 2 kids.... :)

I was just reading one of your posts ""Another family is going to Finland to see a genetic specialist"" - do you have any information on the doctor or clinic this family is going to see or have them gone yet? From my knowldege, Finland has the biggest number of GA cases in the world, so perhaps they might be doing more research than here in US. 

Thanks, 

Anna