Woman suffering with extreme fatigue waited 31 years for a diagnosis

A woman who had to deal with extreme fatigue and pain all her life had to wait three decades for a diagnosis.

In the worst case scenario, Suzanne Kidd fell to the ground up to eight times a day without warning.

The 36-year-old was left with no choice but to strategically place chairs and stools around the house to cushion her falls, according to the Liverpool Echo report.

Before the attacks began, Suzanne, who lives in Formby, Merseyside with her parents Jackie and Mal Kidd, suffered from other symptoms that were initially misdiagnosed.

And it wasn’t until she was 31 that she was diagnosed with hypermobile Ehlers-Danlos syndrome (EDS), a disease that affects her joints.

Suzanne said, “It is a rare condition that is not known even in the medical community.

“Maybe you have 10 minutes of training in medical school.”

“When I was 16 or 17 years old, I was mistakenly diagnosed with Chronic Fatigue Syndrome (CFS).

“I just accepted that, there are a lot of crossovers with symptoms and I haven’t thought about it too much.”

In addition to the fatigue from which she suffered, Suzanne often complained of chronic pain, especially in the knee, and even performed several surgeries that were actually unnecessary.

She said: “I had three knee surgeries, the last one was nine years ago.

“It took a long time to heal and this operation shouldn’t even have happened.

“I ran a cake shop from home and in my late twenties and knew something was wrong.

“I would see physical therapists on my neck, shoulders and hips, and it was a physical therapist who noticed that I was hypermobile.

“She gave me a booklet with a tiny section on hypermobile syndromes.

“I googled it, you know how to do it, and when I came across EDS my whole life was explained.

“I went to a support group and was amazed.”

After learning more about the syndrome, Suzanne knew her previous diagnosis of CFS was wrong and desperately sought more specialized help to get an official diagnosis.

Suzanne said, “I went to a private doctor in London, it was the closest specialist I could see.

“It was so surreal, I was with her [the London specialist] for an hour and she discovered a lot of things.

“I have returned to London twice to see specialists. I am very happy to have my parents’ financial support.

“There should be special care near the house, you shouldn’t have to travel hundreds of miles in such a small country.”

The specialist realized that some of the symptoms Suzanne had, such as thinness of the skin, stretchy skin, mobility, and stomach problems, were actually related to EDS.

But although she knew more about her condition, her health continued to deteriorate and her ability to walk began to be severely impaired.

She added, “I should have been using a wheelchair at the time of my diagnosis.

“Things got more difficult, the tiredness and pain made walking and standing very difficult.

“Standing still is the most difficult thing for me.”

Suzanne began her rehab at the Royal National Orthopedic Hospital in London, where she received expert care and was able to meet others with her condition.

However, after rehab she began to suffer from the drop attacks and sought help from the charity EDS UK.

Drop attacks are sudden, spontaneous falls while standing or walking with complete recovery in seconds or minutes.

She added, “Since I finished those three weeks of rehab I have developed drop attacks – I fall to the ground without warning, they are not great.

“At first it happened every few months, but in the worst case, two years ago, it happened eight times a day.

“We had chairs and stools strategically placed around the house.

“All I wanted to do was go out with my dog, buddy, really.”

Woman suffering with extreme fatigue waited 31 years for a diagnosis 1

“I contacted EDS UK, nobody knew why [drop attacks] happened.

“I just accepted it. My parents got used to it.”

After seeing another doctor, Suzanne only has falls about once a month and has worked hard to be able to walk again.

In fact, she has now risen to the challenge of running three miles a day for 70 days for the charity that helped her and wants to use EDS to show others her positive attitude.

She said: “Christmas 2019 was the first time I could walk Buddy alone

“I want to do something useful. 349 kilometers is the distance from my home to the hospital where I was diagnosed.

“I started on February 24th and I have nine weeks left. It was a challenge, but it’s going really well.”

Diagnosis of EDS takes an average of 10 years and affects about 1 in 5,000 people.

“Because it is multisystem and affects most parts of the body, there is a saying in the EDS community,” If you can’t connect the problems, think of connective tissue. “

“Some doctors do not always look at the patient as a whole, and this is likely one of the factors contributing to delayed diagnosis.

“I just wanted to show something positive, you can still have a life – it doesn’t look like you thought, but you are still a person.

“You have loved ones and friends.

“I’ve always been pretty positive, I’ve had some dark times, but I got through them thinking it might get better tomorrow and it will pass.”

To help Suzanne meet her fundraising goal, you can learn more and keep donating www.justgiving.com.

For more information on EDS, see the NHS Website and Ehlers-Danlos Support UK.


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