AMD diagnosed at the age of 36

I am currently a 44 year old female that was diagnosed around 8 years ago with AMD. My last appointment revealed that I had an "impressive amount of drusen" and it has gotten worse.


My grandmother had this disease very late in life. A specialist once told me I have a hereditary version of AMD however no-one in our family has the disease other than my grandmother. I also have a condition which is a result of low-estrogen. I can't help but wonder if there is a link.

I am getting to the depressed/frustrated state, but am hoping that this forum might help as it appears that there is a number of people under the age of 50 that have this condition.

I would eventually like to find someone that could do genetic testing or find a clinical trial study however it appears most of them are for 50+ years of age.

I only wish to be able to see my children marry and see my grandchildren. That is my one wish in life.

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Nov 25, 2016
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I was 15 years old
by: Anonymous

I was diagnosed 2 years ago with Wet AMD when I was 15 years old. I've been told that there's nothing they can do about it as "the damage has been done" but I do get regular injections to stop my condition worsening. I do worry that my condition will worsen as I get older and that this could occur in my other eye. I think it's best to stay hopeful, try all the things you can to keep your eyesight stable and keep asking the doctors what more you can do.

Nov 02, 2011
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Reply to Diagnosed at 36
by: Mary (Iowa)

If you search the posts you will find "The Blessing of Herbal Tincture" which was posted this week. Please read it. I was diagnosed with drusen in the back of both eyes at the age of 30 and macular degeneration runs in my family. I am now 51 and my eyes are stabilized and I see perfectly fine. You don't have to simply accept what you think is your fate. Take control. Do eye washes, do bowel and liver cleanses, take supplements, improve your diet, etc. There is so much out there that one can do to take control of your own health. Our medical establishment is not educated in alternative health and therefore cannot help you. You must do it yourself or seek out a good alternative doctor. Our bodies can heal themselves.

Jan 16, 2011
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Reply to Diagnosed at 36 with AMD
by: Anonymous

I am very sorry to hear you have this problem with your eyes.

Although not in your situation, I am 58 and was diagnosed with early macular degeneration two years ago. Luckily, so far, it has not effected my sight.

When I read your post I immediately remembered something I had read in one of Dr Sandra Cabot's books. She is an Australian doctor, specialising in the liver. She believes, as with Traditional Chinese medicine, that the liver is responsible for the health of our whole body - it is 'the general army of the body'.

I quickly googled 'low estrogen and macular degeneration'.

Here is the link:
http://ezinearticles.com/?Candida-Night-Sweats---Problems-to-Cause-Estrogen-Loss&id=5439048

Although it mentions night sweats related to low estrogen, it also mentions macular degeneration and other diseases.

I have previously posted letters related to the liver on this site, as I believe the liver is a definite link to many of the diseases we now see in our society. I have read three of Dr Cabot's books so far. They are :

The Liver Cleansing Diet
Fatty Liver - You Can Reverse It
and

Can't Lose Weight - You Could Have Syndrome X

This site also recommends other books by this Doctor. I found these three books were excellent ones to gain understanding and start acting to try and save my health and sight.

I know how difficult it is to get real help from professionals, so we have to try and help ourselves. Holistic medicine has gained much respect.

I hope you read Dr Cabot's books and are able to make some changes that may help you. I have also found that drinking 2-3 litres of water daily stops the aching (and scratchy) feeling I used to get at the back of my eyes. This indicates to me that drinking the water is helping flush toxins from my system.

My eyesight has actually improved since using the liver cleaning diet principles, so I hope the same can happen for you. Good luck and keep us posted.

Regards...Barb

Jan 16, 2011
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Too Young for Age Related Macular Degeneration
by: Anonymous

Hi,

I was diagnosed with dry AMD when i was 38.

Told I had 10 years left to drive and read.

I am now 44. I have been told to prepare myself to give up driving anytime soon.

My last appointment with the eye consultant showed cysts at the back of my retina which she needs to do more tests to see if they have started leaking..so at the moment not looking good..

I just want to carry on as normal as possible.

Keep working which can be stressful at times and try and stay positive even though at times that can be very HARD!!!

May 28, 2010
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Scared!
by: Anonymous

Hi,

Thank you for sharing your thoughts and feelings about your diagnosis. I am 52 years old and was diagnosed with very early stage AMD this week. I had no idea that I might have this condition since I have regular eye exams.

I had an eye exam in Sept. 2009 which showed everything was fine (as far as I was told). Then, I went to a new doctor this week because I have dry eyes and wanted to see if there was a better way to deal with that.

I had no vision problems except I use reading glasses. My distance vision, night vision, etc., are all fine. I was shocked, stunned, whatever the word, when the doctor pointed out the problem on the computer screen.

I had only recently heard of AMD when an elderly neighbor had it, so I don't think there was any family history. Although I'm still in shock, I immediately started on the vitamin and supplement therapy and made sure I'm following the diet.

I don't know what to expect, except that everything I read seems to indicate that at some point I will lose most of my sight. It feels like a lingering death sentence because everything is fine right now, but there is this time bomb ticking out there that will go off at some point. I just feel that, like you, I am far too young to have this happen.

I guess I will be going through the stages of grief over and over again as I am reminded every day of what is pending. I don't expect much from the vitamin therapy and lifestyle changes, since I already have the early stage AMD, but will continue.

It would be interesting to know if anyone has had any real success with it and been able to slow or stall the progress, at least for another 25 years! Thanks for reading.

Apr 25, 2010
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Heriditary Version of AMD
by: Anonymous

Hi
I am a 57 year old female, who has been diagnosed with the early signs of AMD in the last year.

I have several small drusen in each eye.

I have seen several eye specialists, who have given me slightly different versions of the condition of my eyes.

The most recent was that my drusen are not typically consistent with either wet or dry AMD. This specialist felt I may have early signs of Best's disease, which is hereditary. Best's disease is usually associated with young children, but can, I believe, occur in older people.

Best's disease -(also known as vitelliform macular dystrophy) is an inherited form of macular degeneration characterized by a reduction of central vision.

Apparently,in some cases, Best disease does not progress far enough to cause significant central vision loss. I believe, although Best's disease is in the macular degeneration 'family' it can/may have a better prognosis.

I do not if it is of any help to you, but maybe that is what your specialist meant by the 'hereditary form of AMD'.

Maybe this will give you a lead to research, or look into, as I am doing myself.

Wishing you all the best.
Barbara


Apr 24, 2010
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Early Age AMD
by: Anonymous

Both of my parents had dry AMD but were not diagnosed until their 80's. I have it and was diagnosed at 56. Neither of my sisters have it yet.

I totally understand the frustrated/depressed feeling you have. I lost my last job because I could no longer see with clarity to do fine detail work.

I would also like to see if there is someway to do a genetic study prior to age 50.

I'd like my children to be tested and pray that they develop treatment for dry AMD.

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Diagnosed with Macular Degeneration at 35 years old!

by Erin
(TX)

In October of 2011 I was diagnosed with Macular Degeneration. I was also only 35 years old. This came to huge suprise for me because I have never had any kind of vision problems AT ALL!

I literally woke up one day with my vision blurred and straight lines bent in my right eye. After going to the doctor and hearing that I have it in both eyes, I was devastated and find it still hard to wrap my head around it.

It's only been three months since I was diagnosed and it has gradually worsened. It disturbs me that I have this disease at such a young age.

I was told that I was born with the gene mutation and someone in my family has it, yet we still have no clue who does. I am no longer able to drive at night and watching television has become a challenge just like using the computer has.

I'm just curious if this is very common for someone as young as I am to have this?

REPLY

Hi Erin,

I am sorry to hear about your sudden vision loss and new diagnosis of macular degeneration. There are many different forms of macular degeneration -
because you are so young, it is not the typical age related macular degeneration but rather a type of macular dystrophy.

There are several different forms of macular dystrophy, (also called juvenile macular degeneration) that is the result of genetic mutations.

Stargardts is the most common form of juvenile macular degeneration. It is an autosomal recessive condition. What in the world does that mean? It means that these children or young adults have parents who each carry one copy of the mutated gene. However, the parents, typically do not show any signs and symptoms of the macular dystrophy.

Have you seen a retina specialist? He/she can tell you more about what type of macular dystrophy you have. Meanwhile for more info on Stargardts:

Stargardts Disease

For help with your computer go to:

Computer Low Vision Aids

Let us know if there is anything more we can help you with.

Kind Regards,

Leslie Degner, RN, BSN





Comments for Diagnosed with Macular Degeneration at 35 years old!

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Oct 18, 2014
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My Fears
by: Anonymous

I am 44 and have this for years.. I think at 32 it started. It runs in my family, but my family doesn't speak about it,....so i just found out a few years ago. I still can drive a car, but I can't see at night. And I can't read well.

I fear the future.

I will end up with my hearing and smell :) but I am an art painter, and do etching.. I feel bad about this.

Jan 11, 2012
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Also Diagnosed with Macular Degeneration at 36
by: Tina

Hi Erin,

I was diagnosed at 36 and they tell me I have dominant drusen form of macular degeneration and that someone in my family also must have it.

My grandmother had age related macular degeneration at 60 but no one else in my family has had it.

I also have a wavy line in both eyes. I try to stay positive every day, but it is very hard to do at times when I do not know if I will have the opportunity to see my children get married or be able to help with grandchildren.

I have had some hormone problems in the past 10 years and sometimes wonder if there is a link. Stay positive! We are here for you.

Jan 10, 2012
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Write Down Your Visual Symptoms
by: Vickie in Michigan

Writing down your exact symptoms might help your retinal specialist diagnose you.

After 3 doctors and 2 retinal specialists, I was finally able to communicate that the distortion I see in one eye is the mirror image of the distortion in the other eye. Perhaps it was this tidbit that changed the diagnosis from macular degeneration to pattern dystrophy.

At any rate, a month ago my second retinal specialist changed the diagnosis of the first.

Jan 10, 2012
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Two Possibilities
by: Dr. Randy Wong


Dear Erin,

The diagnosis also surprises me. You are too young to have age related macular degeneration.

However, there are two other possibilities;

1. You you have idiopathic choroidal neovascularization (a disease seen in younger individuals which looks and acts like wet macular degeneration).

2. You have a congenital, i.e. inherited, macular dystrophy or type of "degeneration" affecting the macula.

Not that there is any particular remedy, but I'd push your doctor for a more specific diagnosis.

Stay in touch,

Randall V. Wong, M.D.

Dr. Wong is a Retina Specialist in Fairfax Virginia

Retina Specialist
Fairfax Virginia

Jan 06, 2012
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I Can Relate
by: Mary Lou

Dear Erin,

I would like to tell you that Leslie has been helpful to many of us by offering her expertise on this subject.

The most important step I took after being diagnosed was to see a Retina Specialist. I am not young like you, but if you haven't done so, please plan to, because then you will have answers that leave you less anxious and perhaps learn of available means to enhance your vision that you or a General Ophthalmologist may be unaware of.

It is a time that is cause for much concern, as I can attest, but with finding answers, educating oneself to the aids available, and deciding to meet this challenge head-on, are means of survival that are of utmost importance. Best of luck to you.

Mary Lou

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