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Turning the tide for rare disease

A ‘bullhorn in stilettoes’: Tisha Foster’s unique approach to raising awareness of hidden disabilities

Thirteen years ago, Tisha was diagnosed with stiff person syndrome (SPS), a condition that has brought her many challenges. Here, she describes how SPS has humbled her and driven her to raise awareness for people affected by hidden disabilities

By Geoff Case

Here, she describes how SPS has humbled her and driven her to raise awareness for people affected by hidden disabilities

In 2009, Tisha Foster was a busy 37-year-old working mum. She was building her modelling career in Brooklyn, New York, and looking after her two sons who were 4 and 17.

In January of that year, Tisha began to feel sudden and intense pains in her back and her stomach.

“My stomach muscles were contracting so tightly that I couldn’t move,” she says. “It was indescribably painful.” Her leg muscles were also affected so that she was unable to move around independently: “I was using my family and my friends as a human crutch.”

As time went on, these symptoms developed into excruciating muscle spasms that would often leave Tisha in compromising or even dangerous situations. “They would take me down to the ground, regardless of where I was. Most of the time it was either me trying to bathe or often right in the middle of the street.

“I would hear the screeching of the cars’ brakes. By the grace of God, I was never hit.”

These attacks were happening every day, but Tisha was left in the dark as to their cause. She was referred for physical therapy, which lasted six months but brought no relief: “This was so crazy, because even in therapy, my therapists said they had never dealt with a patient whose stomach would just not release—they were always so tight.”

Two years after symptom onset, Tisha was misdiagnosed as being in the initial stages of multiple sclerosis (MS), an autoimmune condition that affects the brain and spinal cord. Two months after that, Tisha was given a correct diagnosis: stiff person syndrome (SPS), or ‘stiff man syndrome’ as it was called then.

Stiff person syndrome (SPS) is a rare, progressive autoimmune disorder affecting the central nervous system. People affected by SPS experience stiffening of muscles in their trunk followed, over time, by the development of stiffness and rigidity in the legs and other muscles. SPS can also cause painful muscle spasms, which can occur randomly or be triggered by noise, emotional distress and light physical touch. Twice as many women as men are affected.1

The diagnosis was a welcome breakthrough for Tisha, enabling her to research the condition she has. She soon learned that sound, light and being startled could all trigger her incapacitating symptoms.

SPS is often associated with diabetes and other autoimmune diseases, and this has been true for Tisha too. “One day, about a year after my diagnosis with SPS, I looked at my ankles and they were humongous. My doctor asked if I my thyroid has been tested, which it hadn’t. When that test came back, they said I was living with Graves’ disease as well.”

In Graves’ disease the immune system mistakenly attacks the thyroid, causing it to become overactive.

Alongside the swelling, Tisha’s weight began to fluctuate, and her eyes began to protrude, pulling on her eyelid so that it was unable to close. She was treated with a thyroidectomy (the surgical removal of all or part of the thyroid gland), and her eyelids were cut so that she was able to close them.

Living with SPS has brought Tisha many challenges but fortunately her spasms are now generally under control: “I do have bad days. A bad day would be forgetting my medication at night and then waking up and my muscles being extremely contracted.”

Living in the light

Tisha’s ordeal before and after her diagnosis has brought her a new perspective on life: “Today, my life is so much better than then it was before I was diagnosed. My diagnosis has humbled me in a way I can’t even describe. Before, I was extremely self-centred, and now it’s no longer about me. I take nothing for granted and I put God at the forefront.”

“There’s God and then there’s family. And if that’s all I have, then that’s all I need.”

Tisha’s gratitude and humility have arisen from the pain and powerlessness SPS brought her in those early days. Lying bid-ridden and undiagnosed, wracked with pain from her spasms, she reached the lowest point of her life. Appalled by the prospect of having to spend the rest of her life restricted to her bed or a wheelchair, Tisha prayed to God for two things. Firstly, that she would live to see her children grow up and secondly, that she would once again wear stilettoes—for if she could do that, she would have her freedom back.

Tisha believes that it was God’s grace that protected her when she collapsed in the middle of streets, and she is grateful that her prayers have answered: “God has granted me to be a mom. And he also has granted me to wear heels.”

Here, she describes how SPS has humbled her and driven her to raise awareness for people affected by hidden disabilities

Tisha believes that “we are all stronger than we believe… we rely on doctors to tell us what we can and cannot do”. She knows that some people with SPS are in worse positions, but she urges them not to give up.

“I will still get on that plane and go on vacation. I will still get in that car and drive. I couldn’t do that before. These are the things that SPS was trying to take away from me, but with my faith God, it hasn’t. I’m still very bubbly. I’m still very vocal—I’m Tisha but I’m Tisha 4.0!”

“I don’t live with this condition. It lives with me!”

Tisha describes herself now as a “bullhorn in stilettoes” with a mission to raise awareness for SPS and all people with hidden disabilities. Tisha is doing this in her own larger-than-life way: through her book God’s Angel in Stilettoes, through her social media—where she is pictured hurtling along a zip-line resplendent in stilettoes—and a documentary where she meets with people with SPS, and has them share their stories.

Tisha is determined that society understands that people with hidden disabilities are real people who go through extraordinary daily struggles: “First and foremost, I would love for people to know that we can be productive citizens. Life doesn’t stop. We can continue to live life with minor accommodations.”

One challenge remains… For the last ten years, Tisha hasn’t been able to cross a street because of her vivid memories of collapsing to the ground, locked in painful spasms, with traffic screeching to a halt around her. This is a reminder of the truth of Tisha’s words:

“If a disability is hidden, if it’s invisible, it doesn’t stop the challenges.”

References

[1] my.clevelandclinic.org/health/articles/6076-stiff-person-syndrome


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