Honestly, this is a crazy story— heartbreaking, too. A young woman was told she had lupus, and spent the next seven grueling years enduring treatment, including chemotherapy and steroids, for a condition she may not even have.
This is the story of Kirsty Keep, who is now 23. Recently, a specialist at England’s Guys Hospital said that he thinks her symptoms, which include chronic pain and seizures, are the result of the rare genetic disorder Ehlers-Danlos syndrome (EDS). She may have unnecessarily endured chemotherapy and other treatments.
After the medical appointment at Guy’s, Kirsty’s mother Theresa expressed her disbelief, considering Kristy has had chemo, steroids and other potentially damaging medicines that she may have never needed. Had Kristy been diagnosed sooner, they would not have wasted these past seven years getting the wrong treatment. She explains, “I’ve read so much about lupus for years and now I’ve got to start again with something else. I’m so angry.”
The Guys doc also told her she could possibly have POTS, or postural orthostatic tachycardia syndrome, an abnormal increase in heart rate after sitting or standing up, which often accompanies EDS.
Both women have been left unsure of what to believe after this latest diagnosis. Kirsty is reported to be ‘in shock’ after being told she may have Ehler-Danlos syndrome rather than lupus. Additionally, after all these agonizing years, Theresa is not convinced of the EDS diagnosis, and wishes to travel to Germany to a specialist clinic where Kirsty can be tested for Lyme disease.
The doctors who have been treating Kirsty for lupus have always told the family not to worry about even checking whether she has Lyme disease. But Theresa has already sent blood samples to ArminLabs in Germany, which specializes in testing for Lyme as well as other tick-related diseases.
A spokesperson for Maidstone and Tunbridge Wells NHS Trust, where Kirsty has been treated for lupus all these years, issued a statement explaining that they stand by their diagnosis of lupus. The spokesperson elaborated further, saying Kristy’s symptoms are complex so they’ve worked closely with other practitioners to figure out the best course of treatment.
But listen to this:
When Kirsty was 12, a tick in her garden found its way onto her, and bit her. The bite soon ballooned to the size of her hand. It eventually healed, but over the next ten years, she developed sudden, severe facial pain as well as Bell’s Palsy paralysis. She then became too weak to leave her bed, she began having seizures, and felt as though her ‘bones were snapping’ and her ‘muscles ripping’.
Several years into it, she was diagnosed with lupus. For the past two years, the pain has become so bad that Kirsty begged her mother to take her to the Swiss assisted death clinic called Dignitas. In a last ditch effort, she recently issued an emotional plea to doctors for help, and the Guys specialists responded to her plea.
For now, Kirsty is trying to digest the new diagnosis. She is still very tired from all the traveling to London for recent appointments, and is still spending a lot of time in bed recovering. Next stop: Germany.
What do you think of Kristy’s story? Sound familiar? Have you had a diagnosis journey like this one? Let us know here!