Sophie's POTS & hEDS Private Medical Tests
Donation protected
Hi, this GoFundMe is set up on behalf of my best friend Sophie, who suffers from complex and debilitating medical conditions called Postural Orthostatic Tachycardia Syndrome (POTS) and Hypermobile Ehlers Danlos Syndrome (hEDS).
POTS is a type of autonomic dsyfunction characterised by symptoms of orthostatic intolerance that are associated with the presence of excessive tachycardia, light headedness, fatigue, intolerance to heat and fainting upon standing.
EDS is a genetic connective tissue disorder that is caused by a defect in the structure, production, or processing of collagen. Collagen acts as the body's "glue" - it holds your skin, joints, blood vessels, and other major organs in place. The faulty connective tissue leads to problems with joints and dislocations, painful swallowing and digestion and slow wound healing, amongst many other things.
These conditions have seen Sophie rapidly deteriorate and she has lost the ability to drive, to live independently and she lost her dream job as a midwifery lecturer, all within the space of a year. She is also very unsafe when walking due to pain and fatigue, and regularly has concussions and facial injuries from fainting multiple times a week. She has to use a wheelchair when outside the house and has become virtually bedbound. For every 'good' day that you may see (see the smiling photos), there are twenty times as many bad ones.
When I first met Sophie we bonded over our love of Disney and ended up spending the next two years visiting Disneyland Paris as often as we could. Soph wasn't in perfect health back then, but it was managed and she was able to stand/walk without injury. Nothing could have prepared her for how the illnesses would change her life so dramatically. Now Sophie spends most of her day in bed because the pain and fatigue affect her so much, she's not able to eat a normal meal or watch TV because her symptoms affect her daily life in every way possible. The things that 'healthy' people don't even think about, like popping to the supermarket, making a cup of tea, washing your hair or even being able to make future plans, have been taken away from her.
Both of her conditions are chronic in that they have no cure, but they can sometimes be managed so that the person has some quality of life.
Sophie has been cared for up until now by the NHS, who have sadly run out of options due to her conditions complex nature. We're now seeking private medical advice from autonomic specialists in London, who have proposed a series of intensive medical tests with a plan for rehabilitation and physiotherapy.
This is where this GoFundMe comes in. Unfortunately, the medical tests and proposed help are expensive, so we're really hoping to be able to raise some funds to help Sophie to afford these private options.
The initial intensive autonomic testing will cost approximately £4,000, so that is our target aim, but we're hoping to raise more to cover any follow up appointments, prescriptions and potential treatments. Sophie would also love to be able to upgrade to an electric wheelchair, as she currently can't get around without someone else assisting, and having some independence back would mean the world to her!
I wish I could list all of the ways that Sophie has helped me and my life, but it would take pages and pages. She is the most selfless, generous, caring person I have ever had the pleasure of meeting and I really hope that this page is able to give her some assistance in improving her life.
Sophie has no other options at this point, so please give whatever you can. We are so grateful!
POTS is a type of autonomic dsyfunction characterised by symptoms of orthostatic intolerance that are associated with the presence of excessive tachycardia, light headedness, fatigue, intolerance to heat and fainting upon standing.
EDS is a genetic connective tissue disorder that is caused by a defect in the structure, production, or processing of collagen. Collagen acts as the body's "glue" - it holds your skin, joints, blood vessels, and other major organs in place. The faulty connective tissue leads to problems with joints and dislocations, painful swallowing and digestion and slow wound healing, amongst many other things.
These conditions have seen Sophie rapidly deteriorate and she has lost the ability to drive, to live independently and she lost her dream job as a midwifery lecturer, all within the space of a year. She is also very unsafe when walking due to pain and fatigue, and regularly has concussions and facial injuries from fainting multiple times a week. She has to use a wheelchair when outside the house and has become virtually bedbound. For every 'good' day that you may see (see the smiling photos), there are twenty times as many bad ones.
When I first met Sophie we bonded over our love of Disney and ended up spending the next two years visiting Disneyland Paris as often as we could. Soph wasn't in perfect health back then, but it was managed and she was able to stand/walk without injury. Nothing could have prepared her for how the illnesses would change her life so dramatically. Now Sophie spends most of her day in bed because the pain and fatigue affect her so much, she's not able to eat a normal meal or watch TV because her symptoms affect her daily life in every way possible. The things that 'healthy' people don't even think about, like popping to the supermarket, making a cup of tea, washing your hair or even being able to make future plans, have been taken away from her.
Both of her conditions are chronic in that they have no cure, but they can sometimes be managed so that the person has some quality of life.
Sophie has been cared for up until now by the NHS, who have sadly run out of options due to her conditions complex nature. We're now seeking private medical advice from autonomic specialists in London, who have proposed a series of intensive medical tests with a plan for rehabilitation and physiotherapy.
This is where this GoFundMe comes in. Unfortunately, the medical tests and proposed help are expensive, so we're really hoping to be able to raise some funds to help Sophie to afford these private options.
The initial intensive autonomic testing will cost approximately £4,000, so that is our target aim, but we're hoping to raise more to cover any follow up appointments, prescriptions and potential treatments. Sophie would also love to be able to upgrade to an electric wheelchair, as she currently can't get around without someone else assisting, and having some independence back would mean the world to her!
I wish I could list all of the ways that Sophie has helped me and my life, but it would take pages and pages. She is the most selfless, generous, caring person I have ever had the pleasure of meeting and I really hope that this page is able to give her some assistance in improving her life.
Sophie has no other options at this point, so please give whatever you can. We are so grateful!
Organizer and beneficiary
Grace Painter
Organizer
England
Sophie Jackson
Beneficiary