Clare’s story – As of August 3, 2009

Hello.
My name is Clare and this is my story. I am 41 years of age, married, 2 beautiful kids and have been diagnosed with Stargardts since 1988. That made me 20 at the time. My father and my 3 sisters who are all older than me also have Stargardts. My one brother has luckily escaped. My sisters were diagnosed wiht Stargardts in their teens and it was a very traumatic time for them. Out of the 3 of them only 1 finished school. My 2 other sisters who dropped out of school in their teens blamed it all on their eyesight. I grew up in a household where we were told to hide the fact we had any disability as it would inhibit our chances of employment or just getting on in life. I am the only member of my family to go to university.

Now, looking back at that time I believe that my eyes were deteriorating long before I took the plunge and went to the specialist to be diagnosed with exactly what I knew I had. I definitely, had been living in denial as I could see the damage it had done to my sisters and I was really scared of failing and giving in to it. So even though I was diagnosed in 1988 and was told nothing could be done I just ignored it and got on wiht my life.

I feel now that my eyesight has deteriorated so much that I can’t go on living the way I live. I have actually made an appointment to see the opthamologist again. Imagine 21 years after my initial diagnosis.

It has only been in the past 3 months that I have found this website and been reading more about Stargardts. I have really lived my life just ignoring I have it. I would just tell people I forgot my glasses when I couldn’t see something. I know I will read this back and realise I sound like a crazy woman!! My life has been made very stressful by the fact that I am trying to keep my visual impairment a secret.

But now I am at the point where I am telling friends and am nearly ready to disclose to my employers also of my disability but I can tell you I am freaking out about that.

I hate the idea of anyone feeling sorry for me or treating me differently because I have an eye condition. It also really bothers me having to explain it as I can see some things and not ohters.

Anyhow, can I just say that finding this website and redaing so many stories and being able to identify with so many of you I finally have the courage to put up a “part ” of my life story.

I am particularly interested in hearing from people who have been to Dr Nolan in Conneticut. Could there really be some hope out there.

Thank you for reading my story and please do not hesitate to contact me at the email below. I would be delighted to converse with anyone regarding Stargardts and help support each other.

Clare
E-mail: celk2@hotmail.com