Weʼve raised £0 to My twin sister has Lyme disease and needs urgent treatment and stem cell surgery on her jawbone to save her life.There is no NHS treatment
- Closed on Tuesday, 21st August 2018
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In 1990 a terrible illness hit a small island and my twin sister Janet became desperately ill. No one knew what it was at the time.
Janet was a happy, normal hard working artist with her whole life ahead. Our career as artists was really taking off with some big commissions and publicity.
She lay bedridden, partially paralysed, in agony for two and a half years and
has remained disabled and has now developed further problems because of the illness. Janet has only been able eat runny porridge since 2004 and struggles to digest this.
We discovered after 16 years that it was Lyme Disease
She has a chronic jaw infection and Osteomyelofibrosis in her jawbone. The infection has damaged the lining of her mucous membrane causing Mucositis which is why she can only manage runny porridge and cannot eat solids or digest anything else.
This has caused Malutrition and Photophobia ( cant bear light) and MCS (multiple chemical sensitivity) and allergies.This is caused by the body not being able to metabolise xenobiotics, leading to a build up causing reactions to the smallest amount of chemicals, smells, perfumes, washing powders etc.
This means that she cannot socialise or have visitors without problems.
Janet has to keep her head and face really warm 24hours a day and has to wear 2 balaclavas and a woolly hat or the infection gets worse and wear layers of clothes to keep warm as she is so thin. She hates looking like this and gets very upset about it.
Janet needs intravenous treatment as she cannot tolerate medicines by mouth.
The only place in the UK that does this is the Breakspeare Hospital and it costs £100 just to travel there and each infusion is around £68 and to stay nearby is expensive.
Janet also needs immunotherapy to over come the allergies which is very expensive and it has been recommended that she goes to see a Professor who does Stem Cell treatment in Spain which we are looking into.
We need to buy a campervan so that we can take her for treatment and she can stay in her own environment with everything she needs with her.
It is heartbreaking for me to see my twin sister suffering so much and there is no help on the NHS. We are reduced to putting this on Facebook as we are in such a hopeless situation
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