by Shona Graham
My mum was 21 years old when she had me, at that age she needed a hip replacement but she was told she was too young. I grew up with a mum who had arthritis and I thought that was normal. I first started getting arthritic pain in my joints at about 16 years old, but that was normal in our family. Along with the arthritic pain my legs would just ache at times but the doctor couldn’t find out why. Not because she wasn’t good she had my mum go through a full body scan trying to figure out what was wrong.
So by the time I was pregnant, the doctor said she was glad I was living off milk because of morning sickness as there was some genetic fault in our family that affected our stomachs, bones and joints. When my son started school he had difficulties I’m dyslexic and so are my brothers although my dyslexia has much less impact on both reading and writing, but he also struggled with pencil grip. Not only was it difficult for him to grip the pencil but writing tired him out, which is something I found throughout school and why I chose science over social subjects. Despite the dyslexia his academic scores started to shoot off the chart by the end of primary, the main concern they had was that in exams in high school he would struggle to write physically in the time given, so the IT team assessed him for laptop to use in exams.
Meanwhile I was struggling with tiredness, strange pains shooting down my legs, what felt like butterflies wings beating over my body when sleeping and the sensation that somebody was jumping on me. After having severe pain in my shoulder joints and hips I went to the doctor. After I told him I had arthritic pain in my fingers, wrists, elbows, shoulders, ankles and knees he said I need blood tests done immediately for rheumatoid arthritis, they came back negative. It took several visits to the doctor after that for him to take me seriously and eventually I saw a rheumatologist.
That visit was the strangest experience; she asked who in my family had underactive or overactive thyroids, which had type one diabetes, which had arthritis in their hips. She seemed to know so much, the first thing she asked me when she examined me was did I know my ankles were double jointed, had the doctor mentioned I was double jointed as a child? I had no idea I was double jointed, I was always good at ballet and gymnastics as a child and I love yoga, would do weird things with my body as a kid but I didn’t know I was double jointed because I thought it meant two joints. The rheumatologist stretched my skin said it did, which was scary because I had no idea what my skin did and then asked to see my scars.
I had never heard of Hypermobility Syndrome, I had heard of Ehler Danlos Syndrome I found it on google when I googled, feels like joints are half dislocated. I knew I couldn’t have that it was genetic and I would have known. Hypermobility Syndrome and Ehler Danlos Hypermobility type were both discovered in 1969 the year I was born, both are practically identical one was discovered by a rheumatologist Hypermobility Syndrome the other by a geneticist Ehler Danlos Hypermobility type.
They are caused by faulty collagen although the gene/genes responsible have not been found it is genetic and one of the reasons early arthritis runs in our family. It is also the reason why, IBS, fibromyalgia and anxiety and panic attacks also run in the family. It could also be linked to Aspergers Syndrome which my son has, as many with ASD have hypermobility. Because the collagen in our body stretches like chewing gum instead of elastic band our ligaments don’t hold bones in their joints our muscles have to do that work they also have to work harder to control movement, this means they struggle and go into spasm then rigid at times so although we are extra bendy we can also be extra stiff – our body’s way of protecting our joints. Our joints can dislocate easy and they can do it frequently but they can be put back in easier as well and most put their joints back in place themselves. Our bones can also break easier and we take longer to heal after an operation. My appendix scar opened up after stitches were removed and this is quite common.
My doctor diagnosed my son after my diagnosis after problems at school getting technical support arranged in primary. He is the only pupil the school has had that needed a scribe not for his dyslexia but for a physical disability. After my diagnosis my mum went to doctor who said she probably did have HMS/EDS but nobody knew what it was at time. My sister went to doctor who said her hip pain was not HMS/EDS sent to a physiotherapist who said her hip pain was due to unstable knee joints because of HMS /EDS and eventually treated. My brother has been going to the doctors for a few years and only a couple of weeks ago different doctor agreed he did not have sciatica and agreed to send him for tests, his old doctor insists he does not have HMS/EDS.
All of us have had our lives completely changed I used to work with children with special needs and behavioural problems, now instead I have an astrology blog because it is something I can do from home, I wrote an astrology book on the Scottish Referendum, in case anybody is interested the Arab Spring and the referendum were part of the Pluto /Uranus square. I have also written for the Red Left and Women for Independence. Writing is something that I enjoy because it is a new way to use old skills and I have a lot of valuable skills and I’d rather focus on what I can do.