Bullied Because of a Rare Condition, This Dancer Is Now Redefining Beauty

By

Cat Cooke

Jun 11, 2021 • 3 min read

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Andrea, a 50-year-old from Winnipeg, Canada, was born with an asymmetrical face. When doctors immediately noticed that the right side of her face was puffy and larger than normal, they assumed the worst. Andrea’s mother was crushed to hear that her baby was “most likely mentally handicapped and had cystic fibroma.”

However, Andrea learned to walk before she turned one. She began talking and developing normally. Her parents quickly realized how wrong her doctors had been.

Over the next 40 years, Andrea had countless surgeries, removing tumors and growths that had continued to develop on the right side of her face. She had received a diagnosis of neurofibromatosis (NF), but it never seemed quite right.

But technology and medicine had changed dramatically during this time, so her surgeon suggested something a bit unusual: find one of the specimens, now over 20 years old, that had been saved for future medical research.

It worked. Andrea finally received a definitive diagnosis. She was living with an extremely rare disease called PIK3CA-related overgrowth spectrum (PROS).

Andrea described that moment as a relief.

“It was an actual confirmed diagnosis, not just someone saying ‘I saw a picture in a textbook of someone who looks sort of like you.’”

For the first time, she also felt she could “really connect with people who have what I have [through online support groups]… and see people with my same face. I had never seen anyone before with the same kind of face as I have. It’s an honor to meet someone who shares this irregularity.”

This was extremely impactful after facing years of bullying and discrimination. Andrea was not only bullied by schoolmates as a child but also by adults in her many years as a professional dancer.

“When I was studying full time at the ballet, I got pulled into the office on a regular basis to be given lectures about how I was too fat, and my face was an embarrassment to the profession,” she shared. Despite the hurt and rejection she received during that time, she pressed onward, even dancing professionally in Swan Lake on tour.

“It gets so in your head. I did so many years of therapy for eating disorders and self-esteem issues. You continue to have those voices in your head that you’re not worthy or not pretty. People say, ‘Don’t you want to look like so and so? But it’s only as an adult that you have the guts to say, ‘Well, I can’t. I want to look like me.’”

Today, Andrea feels she has a “responsibility with younger people who have these disorders to ensure that they don’t have to look a certain way to be valued in our society… Don’t let anybody tarnish that shine. You can do and be anyone you want to be.”

Andrea is also looking out for the future generation by doing all she can to find answers, treatment and a cure for her PROS. She has signed up with AllStripes, a platform that enables rare disease patients to access all of their medical records and contribute their de-identified information to advance research.

The community of AllStripes Ambassadors also connects rare disease patients, families and caregivers.

“I wanted this so badly when I was young. I can’t even imagine how different my life would be if at 12, I had access to someone like me who was older and had a similarity. It would normalize it for me. Connecting with AllStripes was a no-brainer.”

Andrea is excited to see more people with rare disorders finally become more visible. “Now there’s a Rockette with an amputated arm. Crazy Legs is a hip hop dancer who does all of his dancing with crutches. Our society is ready for that in so many ways. It’s time.”

But it’s thanks to people like Andrea paving the way and redefining standards that others can now shine.

Editor note: Andrea passed away on December 18, 2022. We are grateful to Andrea's family for allowing us to continue to share her story.

We know that every person's story is unique and deserves to be heard.

Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.

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