Hi,
Myself and a few others are starting a petition to send to David Cameron at Downing Street. We have children who have a rare condition on the eye called 'Coats Disease', it is fact that not alot of people know about the disease, i have realised this since my son Harry was diagnosed in Feb this year. Myself, family and friends had never heard of it and it's frightening to think how many parents and grandparents wouldn't know if something was wrong!
The petition is to raise awareness for Coats Disease and also to get funding needed for research to identify causes, improve treatment and identify possible cures.
What is Coats Disease??
Coats’ disease is a rare condition where there is abnormal development in the blood vessels behind the retina. The blood rich retinal capillaries break open, leaking the serum portion of the blood into the back of eye. The leakage causes the retina to swell, and can cause partial or complete detachment of the retina. It progresses gradually and affects central vision. It is almost always unilateral (affects only one eye). If caught early, some level of vision can typically be restored. If not caught until it's late stages, complete loss of vision can occur. In it's final stages, enucleation (removal of the affected eye) is a potential outcome.
Updates
July 31, 2010
Formal letters are currently being drafted to outline the necessity for increased research funding for Coats Disease. I am collating the personal accounts provided in the comments to include as evidence in our submission to Downing Street.
July 31, 2010
The current level of momentum allows us to shift from gathering support to initiating formal contact with ministerial offices. I am finalizing the briefing documents regarding research funding requirements for Downing Street officials. We expect to confirm a meeting window once these materials are submitted for review.
6 Comments
Whatever we can do to help stop this. Its heart breaking for these little ones.
My niece was diagnosed last year and it was so hard to find info. People need to know the signs early so they can save their kids sight.
This is so scary for any parent. hope this gets to Cameron and he actually does something.
spread the word!! nobody knows what this is until it happens to their own kid.
needs more attention. dont let these kids suffer in silence.
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Hi,
Myself and a few others are starting a petition to send to David Cameron at Downing Street. We have children who have a rare condition on the eye called 'Coats Disease', it is fact that not alot of people know about the disease, i have realised this since my son Harry was diagnosed in Feb this year. Myself, family and friends had never heard of it and it's frightening to think how many parents and grandparents wouldn't know if something was wrong!
The petition is to raise awareness for Coats Disease and also to get funding needed for research to identify causes, improve treatment and identify possible cures.
What is Coats Disease??
Coats’ disease is a rare condition where there is abnormal development in the blood vessels behind the retina. The blood rich retinal capillaries break open, leaking the serum portion of the blood into the back of eye. The leakage causes the retina to swell, and can cause partial or complete detachment of the retina. It progresses gradually and affects central vision. It is almost always unilateral (affects only one eye). If caught early, some level of vision can typically be restored. If not caught until it's late stages, complete loss of vision can occur. In it's final stages, enucleation (removal of the affected eye) is a potential outcome.
Updates
July 31, 2010
Formal letters are currently being drafted to outline the necessity for increased research funding for Coats Disease. I am collating the personal accounts provided in the comments to include as evidence in our submission to Downing Street.
July 31, 2010
The current level of momentum allows us to shift from gathering support to initiating formal contact with ministerial offices. I am finalizing the briefing documents regarding research funding requirements for Downing Street officials. We expect to confirm a meeting window once these materials are submitted for review.
6 Comments
Too many people have never even heard of this. Time for the government to step up and fund some real research.
Whatever we can do to help stop this. Its heart breaking for these little ones.
My niece was diagnosed last year and it was so hard to find info. People need to know the signs early so they can save their kids sight.
This is so scary for any parent. hope this gets to Cameron and he actually does something.
spread the word!! nobody knows what this is until it happens to their own kid.
needs more attention. dont let these kids suffer in silence.
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Too many people have never even heard of this. Time for the government to step up and fund some real research.