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You may have noticed our fundraising campaign is using two logos.
Is it partly because Charlie is indicisive, possibly, but there are reasons beyond that.
Firstly, the Zebra
No, we are not fundraising to save Zebra's, even though that is a noble cause. We are fundrasing to save one zebra, Charlie! In the chronic illness community patients with rare illness or rarely diagnosed illnesses are referred to as zebras. This is why EDS UK and many other fundraisers for EDS patients use the zebra as their logo.
But why?
'“When you hear the sound of hooves, think horses, not zebras.”
This phrase is taught to medical students throughout their training.
'In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.
But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.'
(EDS UK website) https://www.ehlers-danlos.org/about-us/charity-aims-and-focus/why-the-zebra/?fbclid=IwAR2b5BOvVJOIAARlsd5TAX0bUAG1H5RjiGkpB-wg9gQ9K2Jq2qPQfGDaYuc
One of the problems with this, is that doctors are human beings too and as imperfect humans we all have internalised stereotypes. So when a doctor sees a sick young woman who can't eat they often make the assumption that this is down to stress, mental health or that this woman has an eating disorder rather than looking at the bigger medical picture. Which can halt someones diagnoses for decades. (Charlie has direct experience of this.) A knock on effect of that is that many woman trying to have their physcal health taken seriously are then affraid to seek help for their mental health. We all have both, they are of equal importance and should not in anyway discredit each other.
Now, onto the spine
Now it might seem obvious as to why we have a spine as one of the Chance4Charlie logos. As it is Charlie's cervical spine (neck) that we are fundraising to stabilise. However there is another reason, just before Charlie knew how serious her craniocervical instability, atlantoaxial instability and Cervical Medullary Syndrome were Charlie set up a group called Action for Spine Instability.
The aims of this group were as follows;
'A patient campaign raising awareness of the inadequate treatment for craniocervical & spine instability in the UK for EDS patients through the NHS. '
The spine is the logo for this group and although that group is simmering on a lower heat for now, Charlie is committed to bringing it back up to boil once her surgery is complete and recovery is underway. Charlie is in contact with two other patient groups with similar aims but slightly different roles and she plans to use the experience, expertise and contacts gained from Chance4Charlie campaigning and going through the surgery to make Action for Spine Instability a successesful campaign and potentially a charity to help patients going through what Charlie is going through right now. Whether that is through creating change in the UK medical system, providing information, patient support or helping them with their own fundraising campaigns. We have big goals, but that is for later.
By using the Action for Spine Instability logo we are nodding to the connection between the campaigns and making it clear that any of the achievements made by Chance4Charlie will help build Action For Spine Instability, as Charlie is committing to fighting this battle longterm not just until she is in the clear.
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