Stacey Parker is diagnosed with medical condition she was previously told she did not have

Date published: 05 February 2020

Stacey Parker, a chronically ill local woman from Castleton, has been newly diagnosed with a medical condition she was previously told she did not have.

Former council employee Stacey first fell ill with a range of strange symptoms in early 2016, following episodes of allergic reactions which caused rashes, intense itching and swelling.

First diagnosed with Mast Cell Activation Syndrome, which causes sufferers’ immune system to become hypersensitive, Stacey has since been diagnosed with the autoimmune condition Systemic lupus erythematosus, also known as lupus, a chronic disorder which can attack the whole body.

The charity Lupus UK says the condition is an incurable immune system illness which cause reactions leading to inflammatory processes anywhere in the body. A number of major organs can be damaged in an irreversible way and it can be confused with other illnesses, such as leukaemia, muscular dystrophy and multiple sclerosis.

Stacey has previously been diagnosed with conditions such as Postural Orthostatic Tachycardia Syndrome (PoTS), hypertension, hypermobility, kidney problems, lymphoedema and lipoedema, plus spinal issues.

In a last-ditch attempt to find out if the 31-year-old had any other underlying conditions which had been missed and needed treatment, the family went to London to privately see a professor of rheumatology last month.

The diagnosis has come as a shock to Stacey and her family, as she was told in the early days of her illness that she did not have the condition – and a number of her issues and complications have arisen as a result of lupus being untreated.

Speaking about her new diagnosis, Stacey said: “I am so angry with the time it has taken to get this diagnosis.

“Ultimately, being left for so long has ruined my life. I have had to give up my job, lost my independence and do not know what my future will hold at just 31 years of age, and that is soul-destroying.

“I see my peers living their lives, getting married and having children, and I feel as though so many opportunities have been taken away from me unnecessarily. My parents’ lives have changed so much; they have had to sacrifice so much, and this could have been avoided with an early diagnosis and early treatment.”

She added: “Our lives have been turned upside down because I need ground floor accommodation to meet my needs. My parents had to sell their own home and we are living in temporary accommodation whilst we wait for the ground floor accommodation to be completed.”

Stacey’s mum, Bernadette said: “The professor advised that a lot of Stacey’s issues and complications now have arisen as a result of lupus being untreated or insufficiently treated over the years. He is uncertain whether Stacey will be left with permanent damage or complications too, only time will tell.”

Stacey and her family spent much of 2019 fundraising and attending many private medical appointments in London in a bid to help Stacey get better. The funds raised in 2019 reached a staggering £11,000 which helped Stacey get a range of tests she needed.

• www.rochdaleonline.co.uk/news-features/news-archives?type=News&Criteria=stacey+parker&SearchType=Phrase&CatID=

They previously have attempted to raise £100,000 for surgery to correct Stacey’s spinal issues. However, the Parkers say they have been advised against the surgery by three different medical professionals because of the risks involved and the fact it may cause further issues.

The family’s main priority is now addressing the lipoedema, an abnormal fat condition which can only be effectively treated with specialist liposuction.

As it’s difficult to receive treatment with NHS funding, Stacey and her family are now asking for the generosity of the public again to raise £55,000 to treat her lymphoedema, and the outstanding credit card balance for the January consultation.

Bernadette added: “The one appointment cost £3,162.08 in total, of which £800 was paid using the “Help for Stacey” fund, the rest Stacey had to put on a credit card. This was to pay for the cost of the consultation, extensive blood tests and a range of x-rays to ensure she doesn’t have any other underlying conditions and any further complications from the lupus being untreated.

“We appreciate this is a big ask from the community, but this hasn’t been done lightly. Dealing with lipoedema is likely to help give Stacey a quality of life back, reduce pain associated with the condition and improve her mobility.

“Stacey deserves her life back. As a family, we are at the end of the road. I am the only one in our household working as her dad has terminal prostate cancer.

“We are just an average working-class family and cannot afford the ongoing fees associated with getting Stacey better and to give her the life she deserves.”

#HelpForStacey

Donations can be made to the #HelpForStacey fund via GoFundMe, PayPal and bank transfer.

• www.gofundme.com/f/the-nhs-failed-get-stacey-her-life-back
• PayPal: sparker1988@hotmail.co.uk
• Bank Transfer: Stacey Parker
  Sort Code: 11-06-41
  Account No: 13088768