Everyone has a personal battle in their life, something which affects them physically or emotionally. In our house we are no different, we battle through as a family on a daily basis never really knowing what each new day will throw at us. Now, i’m not writing this as a woe is me or even trying to compare our life to anyone else. Like the saying goes ‘There is always someone worse off’. I am writing this because I get asked why i’m doing this massive challenge.
My wife Pippa has Ehlers Danlos Syndrome – Hypermobility (EDS-HT), this is a group of conditions which are caused through genetic alterations in collagen. Collagens are the proteins found throughout our bodies that give strength to our skin, bones and joints to name a few.
(Parts of this description was taken from Alan Hakims article which can be found HERE if you would like more information.)
This basically means Pippa is in pain on a daily basis, She rates her pain on a scale of 1 to 10, with a good day for her being a 6, but most the time it’s at 8+. She wears rings on all her fingers and thumbs, these are not to look nice; but to stop her fingers dislocating. She bruises like a peach, to the point that she has no idea how she even gets them, they just seem to appear. Her want to ride her bike or do a gym session is always put on hold or cut short due to pain in her hips or back. The pain can escalate during the day without warning, meaning she has to either push through the pain or cancel plans, and believe me cancelling plans or giving in to this condition frustrates Pippa.
We battled through years of tests and misdiagnosis to finally get to where we are now. For about 18 months Pippa was told she had fibromyalgia which has similar symptoms to EDS-HT. Since getting the correct diagnosis the Hypermobility Syndromes Association (HMSA) have been our go to place for information and guidance. They are working hard to help educate everyone about the conditions including health care professionals. They use a zebra as one of their mascots because the zebra is representative of rare conditions in medical school (Doctors are taught “hear hoofbeats, think horses”, in short, they’re reminded to look for the obvious and mundane cause before assigning responsibility for a patient’s symptoms to a rare condition). (information taken from HERE) Please don’t think I’m knocking our health care professionals, they do an amazing job and we thank them for their support. But this is a rare condition and people need to be made aware from parents, school teachers to doctors.
With the very real chance that Pippa could end up in a wheelchair in the future and with the possibility our little girl may also have some form of hypermobility syndrome, I wanted to help the HMSA keep up their awesome work. If we can raise awareness of these conditions through my challenge and their educational work, then people can get the correct help they need earlier and potentially save the NHS thousands on wasted tests and appointments.
Please support us by spreading the word and if you have the resources to help financially, we would be very grateful of any donation you could make. If you would like to learn more about the work HMSA do click HERE.
Let’s’ make a difference together