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Sara won’t let rare disorder stop her from living life to the full

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Sara Westhead wearing a T-shirt with a zebra, the symbol for rare diseases (Photograph by Jessie Moniz Hardy)

As a child, Sara Westhead would fascinate people with her “body tricks”.

She could tie her fingers into knots and swivel her head around almost 180 degrees; while lying on her stomach, she could touch her head to her toes.

It wasn’t until last year that the 46-year-old discovered that her strange “talent” was an indication of Ehlers-Danlos syndrome, a rare genetic disorder characterised by overly stretchy connective tissues in the skin, tendons, blood vessels and internal organs.

“I have joints that move way too easily,” Ms Westhead said.

Holding the steering wheel sometimes causes her thumb joints to move out of alignment while driving. She also has frequent unexplained strains and sprains.

At 17, she started experiencing chronic pain and fatigue. Then at 24, she was diagnosed with fibromyalgia, a condition that causes widespread pain and sleep problems, and often emotional and mental distress.

“I kept saying fibromyalgia does not cause joint dislocation and ligament injuries,” Ms Westhead said. “I would sprain an ankle and I had not even done anything to myself. There were all these other medical problems going on. I thought, nobody is this unlucky. There has to be something that connects all of these things together.”

A bike accident tore the cartilage in her knee. Despite numerous surgeries, the tear would not heal; Ms Westhead eventually had a knee replacement.

While researching possible causes she stumbled upon EDS and asked her orthopaedic surgeon if it could be what she had.

“He said no, it could not be that because EDS is far too rare,” she said.

More tests followed. The answer finally came last August when her doctor here, Arlene Basden, connected her with Michael Pincus, a rheumatologist at Lahey Hospital and Medical Center in Massachusetts.

“I was so prepared for that appointment,” Ms Westhead said. “I had a list of everything I had wrong with me. He read through the list and said, ‘Can you do this with your hand?’ Or this?’”

Dr Pincus diagnosed hypermobility Ehlers-Danlos syndrome, one of the more common types of EDS that involves the joints and ligaments.

It brought some relief and also grief in knowing what could potentially come.

Some forms of EDS are life-threatening as they can cause muscles, arteries and major organs to become fragile. HEDS is progressive and can cause patients to be confined to a wheelchair; Ms Westhead sometimes walks with a cane.

“I spent 28 years trying to figure out what was wrong with me,” she said.

There is no cure, although there are medications to treat some of the symptoms. Ms Westhead had a severe reaction to her prescription and she always has some level of pain.

“On a scale of one to ten most people have a zero,” she said. “A three to four is my norm. I am used to it.”

Sara Westhead was diagnosed with rare disorder Ehlers-Danlos Syndrome after a long battle to find out what was wrong with her (Photograph by Jessie Moniz Hardy)

Doctors are taught that if you hear hoofbeats assume it is a horse not a zebra, meaning a patient’s illness is usually something common.

Zebra stripes have become the symbol of EDS and other rare diseases.

Ms Westhead, an English teacher and librarian at Whitney Institute Middle School is determined to live life to the full.

“There are days when HEDS totally sucks but I love what I do and I love my students,” she said. “God has placed me there for a specific reason in spite of the fact that I have these medical issues. I have not hid my issues from my students. When students ask I give them the basic details. That has helped them develop empathy and understanding that people function in different ways.”

She plans to start a doctoral programme in education with the University of Sheffield in the UK.

“One of my other passions is helping and supporting other teachers,” she said. “That is what I am looking at down the line. My dissertation area is autism, education and literacy.”

She wanted to share her story with the public, hoping it would be a “light bulb moment” for a doctor or patient struggling to identify EDS.

To connect with others who may have it she started a Facebook group, Pink Sands Connection, for locals with connective tissue disorders, autoimmune diseases or chronic pain. It has already unearthed a family with EDS in Bermuda.

“My friend and I decided to start the group so that Bermuda-based patients can find support and services, as well as encouragement,” Ms Westhead said.

Visit Pink Sands Connection on Facebook

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Published June 13, 2022 at 7:48 am (Updated June 14, 2022 at 8:10 am)

Sara won’t let rare disorder stop her from living life to the full

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