Bull eye maculopathy

Dear Sir,

I am suffering of a Chloroquin-Retinopathy with a classic Macula degeneration in bull-eye form since 2002. Until now, my vision has decreased to 20 percent, although the ************** (drug containing “chloroquin”) which was designated for curing a disease of my lungs has been terminated back in 2002 when the Retinopathy has been discovered.

Unfortunately, I am not able to gain access to any substantial information around this topic in Europe, in particular in Germany, where I am living.

I am kindly requesting your guidance to any information source or contact that might be able to help me and point to potential treatment possibilities. Even a report helping to understand what kind of evolution the disease can take would be helpful.

Could you tell me please if there any research going on for find a treatment and wen yes, where?

I would be more than happy to answer any complementary question you might ask on my medical background.

NB: Please apologize my English, I am French and live in Germany.

Yours sincerely,

Paul Pierron
  
E-Mail: paul.***@****



This discussion is related to bull's-eye maculopathy.

[Ray T Oyakawa, MD]

Unfortunately, there is no treatment for this.  I have a few patients with the same problem.

Dr. O.

[Pierron]

Could you tell me please if there any research going on for find a treatment and wen yes, where?

[Ray T Oyakawa, MD]

I am not aware of any studies.

Dr. O.

[randisue]

Hi Pierron, I'm replying to let you you know you are not alone.  I was diagnosed with Bull's Eye maculopathy in September of 2006 due to chloroquine therapy for arthritis
I live in the USA and have been told the same thing there is no treatment. I've been hoping to hear otherwise; but no such luck.
Best wishes and good luck Randi

[John C Hagan III, MD, FACS, FAAO]

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[randisue]

Hi,

This is Randi.  I recently read about a Dr. Edward Kondrot using Stem cell therapy to treat Dry Age related Macular Degeneration .  The Web site said he teamed up with a Dr. Steenblock. and Had an 800 number to arrange for a Free consultation.  I think ; but Im not sure , that they are located in California,  The number was 1-800-300-1063. If you check this out coyld you con tact me or post your results. I'm going to check with my doctor on my next visit.

best wishes and I hope this helps.

Randi

[Pierron]

Hi Randy,

cheers for the information.
Please let me know the results of the discussion concerning  "Dr. Edward Kondrot" with your doctor.

It is rather difficult for me to contact a doctor located in California, since I live in Europe.


Regards,

Paul

[randisue]

Hi Paul.

     Bonjour mon ami. Sorry that's all the high school French I can remember.  I just got back from my appointment with my ophthalmologist.  she said the stem cell treatment was very experimental and they were only using it in people who were almost completely blind. I did find out on the internet that there is a place in  Germany; called the X-Cell Center, where they are using stem cell therapy to treat macular degeneration.  I don't know where in Germany; but maybe you could check it out and get back to me. I wish you good luck and keep in touch.

your friend Randi