Sick woman continues to fundraise for private tests to find answers for illnesses
Date published: 09 February 2019
Stacey Parker (pictured after she became ill) and her mum hope to raise £7,500 for medical tests
A sick woman and her mother are continuing to fundraise for private medical testing in the hope to find answers for her undiagnosed medical conditions.
Stacey Parker and her mum, Bernadette, of Rochdale, are hoping to raise £7,500 so Stacey can get the diagnostic testing she requires. It is hoped with this testing, Stacey will then be able to get the correct diagnosis and treatment she deserves to get better.
Diagnosed with Mast Cell Activation Syndrome, Stacey first fell ill early 2016 with a range of strange symptoms and it is still taking medical professionals’ time to connect all the dots together.
MCAS sufferers’ immune systems become hyper sensitive and they react to all sort of normal things, often with a very limited diet and unable to go out much as they are sensitive to environmental triggers.
This has been further complicated by the number of various medical professionals involved with Stacey’s care, who are located at different locations throughout the country, including Rochdale, Liverpool and Leeds.
Most recently, Stacey, who regularly relies on a wheelchair, has been to Derby’s specialist lymphoedema clinic for help and support regarding her recent diagnoses both lipoedema and lymphoedema.
Lipoedema, often misdiagnosed as obesity, consists of abnormal fat deposits sit under the skin, which can be painful and cause easy bruising, whereas lymphoedema causes swelling in the body's tissues.
Unfortunately, for Stacey, garments useful for lymphoedema will be too painful for her due to the lipoedema. The only treatment that appears to be effective in reducing the build-up of fatty tissue associated with lipoedema is a procedure called tumescent liposuction, which is rarely funded by the NHS.
Stacey was also recently diagnosed with a life-altering and debilitating condition called Postural Orthostatic Tachycardia Syndrome (PoTS), which causes fatigue, palpitations, fainting/near fainting, and stomach issues, amongst other symptoms.
“My heart rate goes up to 180bpm when I’m not doing anything other than standing up as my body is unable to adjust to gravity,” Stacey said.
PoTS is characterised by orthostatic intolerance, the development of symptoms when upright that are relieved by lying down. Stacey is awaiting to be reviewed by a cardiologist but has been told the standard treatment method of betablockers cannot be used: should she need to use her EpiPens for anaphylaxis, they will not work.
Mum Bernadette commented: “We aren’t surprised by the recent diagnosis, due to all of her symptoms and issues, but it does not make it any easier. We are desperately in need to get the additional tests done to make sure she is cared for under the correct medical team.
“Stacey has a whole host of medical conditions and symptoms which she did not have prior to 2016. The fact that Stacey has Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (PoTS) would suggest that she is highly likely to also have Elhers-Danlos Syndrome (EDS), which we suspected anyway.
“The three conditions are often found together and are known as ‘the tricky trifecta’. Due to the recent diagnosis, we need to raise additional funds so Stacey can have the genetic test for EDS also.”
Stacey added: “I’ve been going round in circles for over three years now. I know my conditions can’t be cured but I hope that at least they’ll be able to manage them. I just feel at a loss at the minute because over the last three years, I’ve lost so much.”
However, as her symptoms have not improved, Stacey, who takes a cocktail of medications every day to keep her alive, has since moved back in with her parents, who are looking after her.
As Stacey also has several problems with her spine – including lumbar lordosis, bone spurs, intravertebral disk herniation and joint hypertrophy – she hopes to undergo an upright MRI scan, which would be less painful than a traditional lie-down one.
Fundraising for Stacey is continuing: in just five weeks over £2,200 has been raised towards her medical tests, which now total £7,500 due to the additional need for the EDS genetic test in London.
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