Macular Dystropy - 7 Year Old
by Matt
(United States)
My 7 year old daughter was just diagnosed with the early stages of Macular Dystrophy.
She was internationally adopted at 10 months and we do not have any biological family medical history. She wears glasses and has annual eye exams.
The eye specialist we saw yesterday said to bring her in annually and we'll monitor the progress. What else can we do? Will her eye sight gradually get worse and eventually vanish. Please advise.
REPLY
Hi Matt,
I think the best course of action is to get her examined annually. If she is old enough, or when she is old enough, I'd recommend obtaining the following tests;
a fluorescein angiogram
a visual field
an ERG
an EOG
genetic testing
The fluorescein angiogram will give an indication as to the "health" of the retina and is a good way to document her present state. The test involves injection of a fluorescein dye into her arm followed by pictures of her retina. This may take 10-20 minutes. I'd try when she is mature enough. You probably have several years before it will show any changes, if at all.
The visual field, along with measuring her vision (i.e. reading the eye chart), gives a good indication of function.
The ERG and EOG, so-called electrophysiologic testing, may be helpful in making a diagnosis, but none truly diagnostic.
Genetic testing may be helpful, if, or when, your daughter wants to start a family.
In the end, however, none of these tests are going to change her outcome, but may aid as I've described above. In that regard, there is no hurry.
All my best.
Randall V. Wong, M.D.
Dr. Wong is a Retina Specialist in Fairfax Virginia
Retina Specialist
Fairfax Virginia
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Macular Dystrophy
by Leticia
(India)
Hi,
I have a question regarding macular dystophy. Can this be cured?
My friend is 30 years old and has this problem.
Please let me know is there any treatment for this.
REPLY
Macular Dystrophy of the cornea is a genetic disease characterized by multiple, gray-white
opacities that are present in the corneal stroma and that extend out into the peripheral cornea.
Unfortunately, there is no known cure for it.
Corneal erosions resulting from the macular dystrophy are treated by covering with a
patch contact lens and possibly antibiotics.
An antibiotic patch may also be used.
To prevent corneal lesions, lubricating drops such as artificial tears (0.9% saline) may be suggested.
From a holistic perspective, here are some suggestions that may be helpful:
Lubricating eyedrops with Vitamin A in them (VIVA eyedrops is one brand).
Vitamin A can help with corneal healing
Homeopathic eyedrops with Calendula that supports corneal healing and vitality
Please let me know if you need any further clarification of the above.
Take care,
Michael Edson, MS, L.Ac.
Natural Eye Care
845-255-8222
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Macular Dystrophy and Stem Cells
by Muhammad
Thank you very much for sending new informations continuously.
I want to ask,
1. Whether scientists have started clinical trials on human beings using stem cell transplantation for the treatment of macular dystrophy,retino pigmentosa etc.
2. What are the results of the stem cell studies?
REPLY
Hi Muhammad,
There is one study at Jules Stein Institue in California using stem cells for dry macular degeneration and Stargardts. Here is the link for Stargardt's which is a type of macular dystrophy.
Sub-retinal Transplantation of hESC Derived RPE(MA09-hRPE)Cells in Patients With Stargardt's Macular Dystrophy
However, this is a Phase 1 clinical trial, meaning that study results will not be available for many months or perhaps years.
Kind Regards,
Leslie Degner, RN, BSN
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Macular Dystrophy
by Robert
(Sesser, IL)
Is there any medicine people can buy off the shelf to help prolong, decrease, or prevent this so called disease.
REPLY
Hi Robert,
Macular dystrophy is a genetic form of macular degeneration that develops in childhood, teenage or young adult years. To learn more about types and treatment click here:
Macular Dystropny
Kind Regards,
Leslie
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Macular Dystrophy
by Munther
(Palestine)
Hello,
I have a son 7 years old. He have recently been diagnosed with macular dystrophy.
I'd like to know if there is any confirmatory tests for this disease.
Is there any need to do OCT or FA?
Thanks to all.
REPLY
Mr. Munther,
I would suggest that your son be evaluated with a fluorescein angiogram, a thorough family history (looking to see if this has been inherited) and electrophysiologic testing (ERG/EOG).
The ERG and the EOG (electroretinography and electooculography) are probably the two most specific tests to have done if someone suspects a macular dystrophy.
I am assuming that both eyes are affected?
Best of luck,
Randall V. Wong, M.D.
Retina Specialist Fairfax, Virginia
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Macular Dystrophy
by Sheila
(United States)
Hi,
I'm writing to address concerns about whether or not there are any tests to determine how quickly macular degeneration will progress.
I understand that usually there isn't a way to determine that. However I am a 42 year old and have recently been diagnosed with hereditary macular dystrophy.
I am curious as to whether or not there have been any links to family members following their parents history with progression, etc. . . ???
REPLY
Dear Sheila,
This is a tough question. First, I am not aware of any tests specifically aimed at tracking the disease.
While periodic fluorescein angiograms might be useful, you must also correlate them with the vision and this is tough to do.
I also am unaware of any longitudinal studies regarding progression. My personal opinion is that there are too many environmental variables, as yet undiscovered, that control the progression and severity of the disease. As an example, how does diet affect the disease?
Last, we don't know if you actually have the same disease as cohorts with a similar diagnosis.
What does this mean? We don't know alot about hereditary macular diseases....including macular degeneration. We can barely make the diagnosis.
Randall V. Wong, M.D.
Dr. Wong is a Retina Specialist in Fairfax Virginia
Retina Specialist
Fairfax Virginia
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Which Type of Macular Dystrophy do I Have?
by Rahul
(Delhi, India)
I was diagnosed with macular dystrophy in both eyes in 1998 at the age of 14.
At that time no one in my family had this disease - but now my real uncle my father's big brother has been diagnosed with wet AMD this year. Now I am 26. So I want to ask if I have Best Disease or the other one?
Answer
Dear Sir,
There are several differences between Stargaardt's and Bests' Disease. Typically, Stargaardt's is diagnosed at an early age. It is considered one of the "macular dystrophies." It typically does cause some vision loss early on.
Bests' disease may be diagnosed early, but typically, there is vision loss late in life, that is, Bests' disease may be diagnosed early, but is usually asymptomatic.
Obviously, we can not make a diagnosis, but I would guess that your uncle has a completely different disease than you. I would suggest evaluation with a retina specialist.
Randall V. Wong, M.D.
Dr. Wong is a Retina Specialist in Fairfax Virginia
Retina Specialist
Fairfax Virginia
To learn more about macular dystrophy go to:
Macular Dystrophy
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Macular Dystrophy
by Sandra
(Canada)
I was told that I have Macular Pattern Dystrophy but am having trouble finding information on this topic.
Is it the same as Macular Dystrophy or Macular Degeneration?
REPLY
Hi Sandra,
Thanks for your question. Pattern dystrophies are an inherited form of macular degeneration. These retinal conditions often develop in midlife so they are often misdiagnosed as age related macular degeneration.
There is not as much information out there on the macular dystrophies as there is for AMD.
I have written a page with general information. On the page on macular dystrophy you'll find a link to an excellent article on the mdsupport website that provides more details. Click here to learn more:
Macular Dystrophy
Kind Regards,
Leslie Degner
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