My 7 year old neice in Queensland has recently been diagnosed with Ehlers-Danlos Syndrome (EDS) which is an inherited disorder whose symptoms include double jointedness, easily damaged, bruised and stretchy skin, easy scarring, poor wound healing, flat feet, increased joint mobility, joints popping, early arthritis, joint dislocation and pain, premature rupture of membrane during pregnancy, soft and velvety skin and vision problems.
Haylee went to a paediatric rheumatologist a couple of weeks ago and the doctor was suprised that she was not in any pain as she was one of the most flexible children he had ever seen. Haylee has EDS type 3 but fortunately she is not in pain at this stage. She does have very flexible muscles and can contort many parts of her body. She has to be careful in life and cannot do a lot of normal sports, but can do low impact stuff like swimming, walking and cycling. Fortunately she loves to swim and is apparently quite good at it. Haylee does have flat feet, heart problems and problems with her eyes. She now has to wear glasses all the time and also an eye patch for a couple of hours each week. She is finding the patch very hard work as she can't see much at all out of her bad eye, but they are trying to see how much sight can be restored to that eye. She is also having physiotherapy to help her. Her future life will involve lots of doctors, medical and hospital visits and is quite devastating for her parents and grandparents to deal with. Haylee's brother Jack possibly also has a mild version of EDS.
Anyhow, today Haylee is being admitted to hospital for an eye operation which will slow the degeneration of the eye, and this is the card I have sent up for her. The zebra is the symbol for EDS and other weird illnesses. This is not actually a stamp, rather an image of a stamp the owner let me use.
If you would like to send Haylee a card or a little letter please send them c/- PO Box 986, Park Ridge, 4125, Queensland.
Thank you for reading through all of this.
On behalf of Haylee and the family - THANKYOU.
ReplyDeleteIf you haven't heard of Ehlers Danlos Syndrome, you're not the only one. It's not something we knew anything about before Haylee's diagnosis, but we know a lot of stuff now - wish we didn't.
Haylee in surgery as I write x