Stargardt's Disease

by Vipra
(United States)

Hello,


My dad has Stargardts disease with low vision in both eyes. Is there any treatment available for this problem?

REPLY

Hi Vipra,

Stargardt's is a genetic form of macular dystrophy. It results in a dying of the photoreceptor cells in the macula which provide us with our detailed and central vision. So at this time there isn't any treatment that can restore these dead cells.

However, there are many excellent visual aids to assist people like your father. To learn more about Stargardt's disease, low vision rehab and visual aids go to:

Stargardt's Disease

Kind Regards,

Leslie Degner, RN, BSN

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Feb 05, 2011
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Stargardt's Disease and Stem Cell Therapy
by: Anonymous

Hi,

Sorry for my English, I'm French but what I can tell you is that some clinical trial has been done with embryonic steam cells with 12 human in America for Stargardt's disease.

The name of the company which is doing that is called "Advanced Cell Technology".

The study consist to make one injection of embryonic steam cell in the retina.

This study must have been started on last November.


So maybe there is no any treatment for the moment but it could quickly change.... Let's hope !!!!

REPLY

Thank you for sharing this news. I did verify that indeed Advanced Cell Technology is doing this study.

A total of 12 patients will be enrolled in the study at several research sites, including the Jules Stein Eye Institute at UCLA and the Casey Eye Institute in Portland, Ore.

Kind Regards,

Leslie Degner, RN, BSN

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Stargardt's Disease

by Selvaraja
(Kualalumpur, Malaysia)

Hello Doctor,

My age is 35. I am suffering from Stargardt's disease. age 35 at age of 15.

Now my vision is blurry. I'm scared about my vision. So please tell me it's curable or not.


REPLY

Dear Selvaraja,

Don't assume that your blurry vision is due to your retinal disease.

While Stargardt's disease is not curable, I would recommend you be examined by your eye doctor, preferably by a retina specialist, to make sure you don't have something else that could also blur your vision.

How were you originally diagnosed?

Look forward to hearing from you.

Randall V. Wong, M.D.

Retina Specialist Fairfax, Virginia

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stargardt's

by Pamela
(Wi)

I wrote to you earlier about having seen two doctors and one telling me i had soft drusen and one saying i have hayd drusen.I went to see a retina specialist and now he tells me he thinks I have Stargardt's disease.

How can three different doctors tell me three different things. What are the chances of it being Stargardt's when I am already in my thirties and am having no trouble with my vision.

REPLY

Dear Barbara,

I wonder if there is any history in your family? This should give you an idea of your chances. While most inherit this disease as autosomal recessive (both parents carry a recessive gene), there are a few instances where this can be transmitted as a dominant trait.

I believe blood tests could help to see if you are a carrier or if you have the disease. Because of your age, it might be helpful for you to determine this.

It seems we need a specific diagnostic test for Stargardt's, thus, the confusion. While the blood test may help, there is no definite eye test.


Randall V. Wong, M.D.

Dr. Wong is a Retina Specialist in Fairfax Virginia

Retina Specialist
Fairfax Virginia

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Stargardt's Disease and Vitamin A

by Julie
(United States)

Do you have separate recommendations for Stargardt's Disease? They have been recommending restricting Vitamin A. Does your website also deal with this issue?

Answer

Supplementing with Vitamin A is considered contraindicated for Stargardt's Disease as some researchers believe gene mutations lead to abnormal synthesis of the vitamin in the eyes, resulting in increased loss of vision.

Wearing UVA/UVB protecting sunglasses when outdoors is recommended. Although there is no conventional treatment available at present, we recommend supplementing with specific nutrients
that help nourish the retina and/or help protect
photoreceptor cells including:

lutein,

zeaxanthin,

mesozeaxanthin,

bilberry,

omega-3 fatty acids (fish oil),

taurine,

alpha lipoic acid,

ginko biloba (support circulation), and

CoQ10 with n-acetyl-carnitine


to help support energy production in the retinal cells.

Please let me know if you need anything further clarified.

Take care, Michael

Michael Edson, MS, L.Ac.

Natural Eye Care



845-255-8222


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Stargardts - Juvenile Macular Degeneration

by Jocelyn
(Canada)

I was just wondering if your information on AMD applies to people with juvenile macular degeneration (Stargardts macular disorder).

My son has been diagnosed with Stargardts.
I enjoy reading your website.

REPLY

Hi Jocelyn,

There are some similarities - but the main consideration is that patient's with Stargardt's should not supplement with Vitamin A.

It is believed that gene mutations in Stargardt's patients lead to abnormal synthesis of this vitamin in the eyes which then results in increased loss of vision.

Kind Regards,

Leslie Degner, RN,BSN

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Nov 05, 2012
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Facing Juvenile Macular Degeneration
by: suzanne

I have juvenile macular degeneration. I was diagnosed at age 24. I am now 42. I am married and have 2 children ages 8 and 3. For the most part my life has remained normal. I do use visual aides to help me . I have been able to drive during the day, but recently I have noticed a blind spot when I drive. I know I have always had blind spots, but they have never noticeably affected me.

I may have to give up driving. I am having a really hard time with this. I guess since my life has remained some what normal I have been in denial about my JMD. I never tell people about it. Partly because it is hard to explain. I get embarrassed by it. I was embarrassed to use a magnifying glass at the store, but I recently
have gotten over that. I would love some advice on how others with JMD have learned to live and accept their visual impairment. I am really struggling with this. Thank you, Suzanne

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Stargardt's Juvenile Macular Degeneration - Europe

by Sue

Dear Leslie,

Thank you for providing this wonderful source of up to date information on macular degeneration. I have a question to ask of you.

My 19 year old son Henry was diagnosed with the juvenile form of Stargaarts disease - fundis flavimaculatus - about 4 years ago.

We are heading over to Europe (England, France, Switzerland and Italy) on a family holiday at the end of October this year.

We will be over there for 4 weeks. I was wondering if you could suggest/recommend any person, place or facility that we could visit whilst we are there to learn more about the state of research into Henry's eye disorder?

Thanks in advance for your reply. Any advice you could offer would be greatly appreciated.

Kind Regards,

Sue

REPLY

Hi Sue,

There is one clinical trial for Stargardt's disease in Rome, Italy using Saffron supplementation. It is a double blind study randomizing participants which means some participants will receive the placebo study while the other group will receive the active ingredient - saffron.

Saffron Supplementation in Stargardt's Disease

Hope your family has a wonderful trip.

Kind Regards,

Leslie

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Stargardt's Macular Degeneration

by Essoh
(Morocco)

Dear Friend Leslie Degner,

Hi this is Mr Essoh writing and struggling to gather my words. In fact I have a macular degeneration sickness, this happened to me when i was a child.

My parents are poor and they didn't know and still don't know what this sickness means. No one in my country Morocco is able to assess nor to do anything. All doctors are the same. They say you have a Stargardt sickness.

It's like you say, a brown spot covering the central vision in both eyes. It's really a life handicap for me. I'm really not happy because my vision is getting weaker and weaker.

Many things are said about this eye disease, but true materials are still weak to count on.

We are really expecting, like everyone all over the world, to see a change for the best in the field of this macular degeneration.

For people like me at the age of sixty feeling all the time to loose one's vision is really hard to stand.

For the treatment I use lutein and sometimes when there is luck of this food, I use spinach regularly. But I don't feel any progress getting rid of this sickness, but it is still eating my central vision.

From the left eye I can't see anything. I use only the right eye which is also getting gradually weaker.

Sincerely Yours,

Essoh from Morocco

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Stargardt's like macular dystrophy - Genetic Testing

by Jen
(Port Coquitlam B.C, Canada)

Hi there,

My mother was diagnosed of having autosomal dominant Stargardt's like macular dystrophy. I was wondering if there was any genetic testing to confirm that it is dominant or recessive and where?

Thank you so much for any information,
Sincerely,
Jennifer

Hi Jennifer,

Here is a link that you may find useful on genetic testing for Stargardt's.

Genetic Testing for Stargardt's

Kind Regards,

Leslie Degner, RN, BSN

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Nov 23, 2016
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Stargardt and
by: Anonymous

Yes indeed ,you can do a blood test to specify whether it is dominant or recessive.

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