My daughter Tara is 23 years old. She has Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome/Dysautonomia and Severe Gastroparesis.
Ehlers Danlos (or EDS) is a very rare genetic connective tissue disease, this along with its secondary conditions, affects Tara's life in every way possible.
She is bed/housebound, unable to sit up for more than a few moments or walk, unable to eat or drink properly, light and sound sensitive and in constant pain. She has been this way for most of her life and is now fed via a feeding tube into her small bowel.
Tara was misdiagnosed with ME/CFS for 18 years! In that time she was sadly neglected, mistreated and disbelieved by many medical professionals to the point she was frequently accused of faking her symptoms and the only offer of help over the years was psychiatric wards and aggressive physiotherapy. This caused degenerative of the condition she actually had – a severe and degenerative disease.
An inherited connective tissue disorder caused by the body's collagen being defective. Collagen is the glue that holds the body together and is present in every bodily system and organ, even the eyes. The symptoms and complications are chronic and widespread.
Tara suffers numerous dislocations of her joints every single day. She has constant severe pain in her joints, muscles and nerves. Her skin is stretchy, fragile and very prone to tearing and bruising. Local anaesthetics and sedations fail completely on Tara because of EDS, something discovered in the middle of many operations and procedures!
A disease of the autonomic nervous system. Any upright position causes huge heart rate increase, a decrease in blood flow and many neurological symptoms. This is very common secondary to Ehlers Danlos Syndrome.
Tara's heart rate increases drastically when she is upright and the blood pools in her extremities. This makes it incredibly difficult to be upright for any period of time – she suffers seizures and blackouts, spasms and many other life-restrictive symptoms when she is sat up. Due to this Tara is unable even to use a wheelchair. The only journeys outside the home over the last 5 years+ have been in an ambulance on a stretcher as she cannot sit up or weight bear safely or for long enough periods to travel.
A condition where the stomach muscles or nerves do not work correctly and cause paralysis of the stomach. This means food moves very slowly, or stops moving at all through the digestive system. This is common secondary to EDS due to the collagen defects.
Tara is fed by a feeding tube placed in her small intestine because her stomach does not digest food or fluid correctly. She vomits every day. Tara also has a tube placed into her stomach which is used to drain her stomach contents every day to gain some relief from the horrendous symptoms. The tube is prone to sores, infections, blockages, migrations (whereby the tube in the small intestine migrates back into the stomach) and numerous complications.
I am fundraising for Tara to try and fast-track the tests and treatments she so desperately needs. In the coming weeks/months I intend to arrange fundraising activities and ideas to help raise funds for Tara's ongoing treatment. If anyone is willing to come up with any ideas or donations, it would be VERY much appreciated :)
Waiting lists for specialists for these conditions are up to 18 months+ long. Tara's conditions have been left untreated and mistreated for so long that more and more problems are arising, leaving her in urgent need of medical treatment.
There is a world renowned consultant in London who specialises in Severe Gastroparesis caused by EDS, he is the person who is most likely to be able to help Tara with her on-going battle with Gastroparesis and her feeding tube problems. Tara would need to go private in order to obtain an appointment with him.
Tara's PoTS is so severe because it has been unmanaged and untreated for her entire life. Her EDS specialist warned that this would need to be controlled and treated before it would be safe to achieve rehabilitation and treatment of the EDS itself.
The waiting list to see the PoTS specialist is over 18 months long on the NHS. Tara has already waited 18 years for help.