YOU HELPED KAREN PUGH GET TREATMENT
Donation protected
Hello, I'm Karen's husband Andy, and I am appealing for your help.
I've seen my wife go from an athletic hardworking fun loving woman that was always busy doing something, to someone that now struggles to hold up her own head and is at daily risk of paralysis and sudden death.
My darling wife has Ehlers-Danlos Syndrome (EDS).
EDS is a genetic connective tissue disorder that is caused by a defect in the structure, production, or processing of collagen.
Collagen is everywhere in the body, it's kind of like your body's glue it is what holds your skin, joints, blood vessels, and other major organs in place.
She has many dislocations in her hips, knees, shoulders etc even her ribs. It also causes issues with her muscles & digestive system, and she is in constant pain. She always has a smile for her family and friends, but I see the daily struggle she has with this chronic condition.
I'm asking for your help as Karen now has complex problems caused by joint instability in her neck due to weak ligaments that she is now in danger of paralysis and sudden death.
Scans show that she has Craniocervical Instability, Atlantoaxial Instability, and Subaxial Instability.
Her skull is slipping backwards and forwards over the top of her spine when she tilts her head, compressing her brain-stem.
The top two vertebrae, which are not held tightly enough together dislocate when she rotates her head, which causes a wide array of problems and pain. Karen has constant headaches and struggles to hold her head up, as the ligaments in her neck are now too weak to hold up her head.
One of her vertebrae has also slipped backwards and needs fusing and stabilising.
We need to raise £75,000 for the the surgery she so desperately needs to permanently stabilise her skull and neck to stop the risk of paralysis and sudden death and also to give her a better quality of life.
Unfortunately there are no EDS specialist neurosurgeons in the UK that do Craniocervical fusion surgery on the NHS or privately & Karen would need to travel to Barcelona to have this specialist surgery done privately.
The surgery would be performed at the Teknon Hospital for Chiari, EDS & Hypermobility in Barcelona by Dr Gilete and the quotation for surgery includes hospital stay for 12 days (including ICU stay). + companion bed. All Cervical implants, anesthesiology, surgeon & surgeons assistants fees, MRI & CT scans, complication insurance, VAT etc.
Karen is much loved by myself, her family and friends, please help us to help her. We hate seeing her in pain and we don't wan't to loose her.
Below is a picture of the operation needed to stabilise her neck & skull :
When Karen is able, she loves to draw for her family & friends, she also enjoys crocheting toys and gifts.
Unfortunately due to the severe instability in her neck she suffers debilitating headaches that can last up to 4 days a week.
Karen is finding it increasingly difficult to be able to do the things she loves, which I find heartbreaking as she has had to give up so much in life that she enjoyed doing already due to her EDS.
WE WOULD BE ETERNALLY GRATEFUL FOR ANY DONATIONS TOWARDS HELPING KAREN GET THE SURGERY SHE SO DESPERATELY NEEDS. THANK YOU SO MUCH.
Information on Dr Gilete in Barcelona- https://drgilete.com.
Information on Ehlers-Danlos syndrome- https://www.ehlers-danlos.org
I've seen my wife go from an athletic hardworking fun loving woman that was always busy doing something, to someone that now struggles to hold up her own head and is at daily risk of paralysis and sudden death.
My darling wife has Ehlers-Danlos Syndrome (EDS).
EDS is a genetic connective tissue disorder that is caused by a defect in the structure, production, or processing of collagen.
Collagen is everywhere in the body, it's kind of like your body's glue it is what holds your skin, joints, blood vessels, and other major organs in place.
She has many dislocations in her hips, knees, shoulders etc even her ribs. It also causes issues with her muscles & digestive system, and she is in constant pain. She always has a smile for her family and friends, but I see the daily struggle she has with this chronic condition.
I'm asking for your help as Karen now has complex problems caused by joint instability in her neck due to weak ligaments that she is now in danger of paralysis and sudden death.
Scans show that she has Craniocervical Instability, Atlantoaxial Instability, and Subaxial Instability.
Her skull is slipping backwards and forwards over the top of her spine when she tilts her head, compressing her brain-stem.
The top two vertebrae, which are not held tightly enough together dislocate when she rotates her head, which causes a wide array of problems and pain. Karen has constant headaches and struggles to hold her head up, as the ligaments in her neck are now too weak to hold up her head.
One of her vertebrae has also slipped backwards and needs fusing and stabilising.
We need to raise £75,000 for the the surgery she so desperately needs to permanently stabilise her skull and neck to stop the risk of paralysis and sudden death and also to give her a better quality of life.
Unfortunately there are no EDS specialist neurosurgeons in the UK that do Craniocervical fusion surgery on the NHS or privately & Karen would need to travel to Barcelona to have this specialist surgery done privately.
The surgery would be performed at the Teknon Hospital for Chiari, EDS & Hypermobility in Barcelona by Dr Gilete and the quotation for surgery includes hospital stay for 12 days (including ICU stay). + companion bed. All Cervical implants, anesthesiology, surgeon & surgeons assistants fees, MRI & CT scans, complication insurance, VAT etc.
Karen is much loved by myself, her family and friends, please help us to help her. We hate seeing her in pain and we don't wan't to loose her.
Below is a picture of the operation needed to stabilise her neck & skull :
When Karen is able, she loves to draw for her family & friends, she also enjoys crocheting toys and gifts.
Unfortunately due to the severe instability in her neck she suffers debilitating headaches that can last up to 4 days a week.
Karen is finding it increasingly difficult to be able to do the things she loves, which I find heartbreaking as she has had to give up so much in life that she enjoyed doing already due to her EDS.
WE WOULD BE ETERNALLY GRATEFUL FOR ANY DONATIONS TOWARDS HELPING KAREN GET THE SURGERY SHE SO DESPERATELY NEEDS. THANK YOU SO MUCH.
Information on Dr Gilete in Barcelona- https://drgilete.com.
Information on Ehlers-Danlos syndrome- https://www.ehlers-danlos.org
Organizer
Karen Pugh
Organizer