“Good Afternoon, I am Helene and my son is Chrisjan and he is 13 and has been diagnosed with Hypermobile Ehlers-Danlos Syndrome or hEDS.
I have two children, my daughter is 15 and a wonderful child. Straight A’s in school since grade one. Chrisjan has been a bit difficult. Both my children were prem babies, my daughter at 33 weeks and son at 36 weeks, due to an incompetent cervix and cervical cancer. In 2009 their father passed away from White Matter Disease (early onset Alzheimers).We moved to Durban so I could work and have my children taken care of. In early 2011 Chrisjan showed signs of ADHD and we had him assessed and it was confirmed. He is on medication for ADHD and depression as well as Sleep Disorder. In 2015 just after I remarried I had to stop working as Chrisjan struggled a lot with eating and muscle wastage. Due to not having medical aid, we turned to the government hospitals for help where they did all the tests you could think of, from MRI to EEG, ECG to numerous blood tests, and we found out November 2016 he has EDS.He has been stopped from playing all sport in 2015 already and he loves his sport so much. In October 2016 my husband had a seizure and was paralysed on his left side. He lost his work due to it, at least he can walk now but He has a heart condition which is still under investigation and has been diagnosed with Functional Neurological Disorder. I have been looking for work but it has not been easy.
Chrisjan also has a small heart (equivalent to a 7-year-old) and struggles some days in simple tasks. He has twice hurt himself where he needed stitches, once in his index finger (for this he had to undergo anaesthetic) and once he cut his left palm.Amidst all that, my son is a happy and content child. We have now started investigating into why he is unable to eat properly and is severely underweight. He only weighs 30 kg. He walks around with a bit of difficulty, his left knee is aching a lot as they said the cushion is worn through. His right ring finger is in a bent position, and he cannot straighten it which causes problems when he writes. His right shoulder blade in severely malformed and it is shorter than the left. I am at the point where I do not allow him to walk without a T-shirt as I cannot bear looking at him and counting all his protruding bones.He is brave as he seldom asks for painkillers, only when he has a migraine. Puberty has not hit him yet which is what I am afraid of in the near future.And that is our story on a short end. “
If you would like me to share your story with any chronic illness please email me on: JPeaSmith@KingsRoadChronicles.com
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