I entered the world as a sickly baby. Although we didn’t know it at the time, this was due, in part, to being born with a sub-mucous cleft palate which made feeding slow and difficult. My cleft palate has never been repaired, so still have a rather nasal voice, find certain words difficult to pronounce and tend of have lots of colds and infections.
As a child I was very short-sighted and hard of hearing, which made it difficult for me to keep up academically with my classmates. Some days I ached all over and had pains in my hips, knees and ankles. Everything seemed such an effort, as I tried to keep up with my friends. I found games and running hard. I felt ‘different’ but I didn’t know what was wrong with me. Some said my problems were ‘all in the mind,’ but deep down I knew something was wrong.
I married and had two children, and recall this as a happy period in my life. I could do things at my pace and not worry about keeping up with anyone. My husband was always there to help with the things I found difficult. But gradually my health deteriorated until I could longer work and had to be medically retired at the age of 38.
Two years later, in May 1988, I noticed what looked like streaks of black rain falling in front of my eyes accompanied by brilliant flashing lights. My GP referred me to an ophthalmic surgeon and within six hours I was operated on for retinal detachments in both eyes.
Two weeks later, the left retina detached again. This time I was sent to Moorfields Eye Hospital in London where a surgeon told me that I had a common, but little recognised, disorder called Stickler Syndrome. He also told me I had inherited the condition from my mother, who had become totally blind when I was 8 years old.
At last I had a reason for all my problems! Being diagnosed at the age of 40 was a huge relief and the start of a new life for me. Initially I was angry and frustrated, but I soon channelled that negative energy into writing and became a full-time writer of articles and non-fiction books. I also founded the Stickler Syndrome Support Group, and wrote a book on the condition.
Since 1988, I have had more than twenty operations on my eyes, but I still have enough sight to get out and about, and with the help of various aids enjoy life. My hearing has deteriorated, but this is helped by a hearing aid. My joint pains range from mild twinges to severe, unrelenting pain which can leave me incapacitated for days. I have had two knee replacements, one in 2003 and the other in 2007, and a left hip replacement in 2015. Although my health has worsened, thanks to the help of my GP, my ophthalmic surgeon and my rheumatologist I manage my symptoms and try not to let things get on top of me, especially when I am having a ‘down’ day. Living with Stickler Syndrome is not easy and it can be downright annoying at times, but with the right information and support, a determination to succeed and a positive outlook on life, so much can be achieved. After all, life is what you make it.