After three years of various struggles with joints and co-morbidities, I was finally referred to a rheumatologist who said I had hEDS but then wrote to my GP with a diagnosis of ‘Joint Hypermobility’. I have so many issues with various joints and am currently under two specialists for different recurrent joint subluxations. That said I get out when I can, I have become really good at pacing myself and feel like I am on the whole managing a bad situation, rather well. Then a blow came.
I have three children aged 18, 11 and 8. Throughout my journey, I have learned so much about hypermobility and it has certainly crossed my mind that two of my children may have some level of hypermobility in their joints. But this week I realised, I may have genetically passed on this connective tissue problem to my children. My eight-year-old daughter complains of aches and pains regularly and whilst everyone around her (school, dance teachers etc) all declare it ‘growing pains’, I have suspected for some time that it is actually my faulty genes in her body. I remember my mother taking me to the GP at a young age and my pain being dismissed as just growing pains yet I still accepted this for my daughter until last Monday when she jumped out of bed screaming that her knee was ‘stuck’.
I had noticed she was sleeping on her front during the night. I probably noticed because I know I can’t do that or my collarbone and lower back will subluxate. That morning her knee was agony but had ‘clicked back to normal’ and she was adamant she didn’t want to miss the school trip. I knew immediately that everybody would be of the opinion; ‘It can’t be that bad, she seems fine, she’s putting weight on it’ etc. But I know the pain when a joint moves further than it should and locks. I know the apprehension you feel afterward. Not daring to use it, in fear of it happening again. That whole week she declared pain on and off but still managed to get around and all of her peers and adults told her there was nothing wrong with it.
After she had begged me for days to see a doctor, I made an appointment and even as I went into the surgery I found myself stating, ‘It’s probably just growing pains and I’ve bought her a tubi-grip to see if it works as a placebo’. I had even warned my daughter that the GP was likely to state it was just growing pains that would clear up soon.
The GP was fantastic. She didn’t dismiss the situation flippantly. In fact, she was very thorough, examining my daughter and assessing her mobility. Imagine my surprise when she declared ‘I think your daughter is hypermobile with flexible joints and I believe her knee has dislocated in her sleep and the ligaments are damaged as a result but, primarily she is apprehensive about putting weight on it, in fear of it happening again’.
This made me begin to think about my 18-year-old son’s recurring problems with his knee joint since it dislocated a few years ago. He’d had a four-hour session of marching with cadets one day whilst away on a camp. The GP at the time dismissed it as an isolated injury with very little examination. He returned when it kept happening and was eventually referred to physiotherapy, who gave him lots of exercises to do and discharged him. At various points, it has partially dislocated and once it has been clicked back in, been sore for a while. He has given up seeking medical attention and just clicks it back and carries on. He has had so many visits to the hospital with injuries to joints and we have a family joke that nothing is ever broken just sprained/ligament damage. Has he also inherited my faulty genes? More than likely.
Two days after the appointment and my daughter was doing cartwheels in the park with full mobility restored. My son appears to click his knee back into place regularly and carry on. This is their norm. They accept it and it doesn’t limit them. What an inspiration. Hopefully, this dreadful condition will not take over the rest of their joints before their time like mine but in the meantime, I have learned the valuable lesson that it’s best to just deal with it and move on with the rest of your life. They don’t blame me for their problems so I will not blame myself but instead use my issues to learn how to help them in the future should they, God forbid, end up like me.
Everything Between 