How Leeya’s GLA Diagnosis Tested Friendships and Led to a Passion for Advocacy

By Taylor Kane

Mar 19, 2021 • 3 min read

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

Leeya began experiencing symptoms of GLA when she was nine years old. But it wasn’t until she was 15, after having trouble recovering from bouts of bronchitis and pneumonia, that a doctor performed a CT scan and realized something was very wrong.

“It looked like I had bone cancer or Leukemia,” Leeya explains.

After ruling out cancer, doctors performed a spleen biopsy on Leeya, which she says they should not have done, even though it led to her diagnosis of GLA. “I had a very bad complication. I gained 30 pounds of lymphatic fluid in two weeks. I looked like I was nine months pregnant at 15,” she recalls.

The next year of her life was full of unknowns, especially because her rare condition had only been recently described. She had always been an active person but was told she should no longer exercise, which was hard on her physically and mentally. She explains that the lack of movement led to her developing neuropathic pain in various areas of her body. Leeya also had to undergo a monthly chemo-based infusion which made her fatigued and nauseous: “It was a lot to adjust to.”

All the while, Leeya was trying to maintain her life as a normal high school student.

“I was basically stripped of my high school experience and I didn’t get it back until the end of my senior year,” she says.

Leeya explains this difficult time in her life allowed her to realize who her true friends are. “It’s sad, but looking back on it, they were not there for me,” Leeya acknowledges.

While in high school, Leeya attended a pediatric pain rehab clinic at Boston Children’s Hospital where she “learned to retrain her nervous system.” She learned how to manage her flare-ups and how to lead a healthy, meaningful life while experiencing chronic pain: “Now, I understand my body.”

Now, Leeya is a 20-year-old college student. Thankfully, she is doing well and is able to be more active. One of the ways she continues to manage her pain is by engaging in activities that keep her mind busy, like Sudoku. “For my birthday, my roommates bought me this 600 puzzle Sudoku book. I was so excited,” she says.

Despite her pain, she motivates herself to keep moving. For example, if she walks around the block, she will reward herself by watching an episode of her favorite show on Netflix. “I have days when it’s really hard,” she says, “but having a good support system helps.”

Leeya learned the Lymphangiomatosis & Gorham’s Disease Alliance was partnering with AllStripes in the creation of a GLA research program and she knew she wanted to get involved.

She calls the AllStripes program a “win-win” situation in that patients retain access to their medical information and data while also contributing to research.

Plus, Leeya is looking forward to using the platform to organize her medical records, explaining it will make things a lot easier for her family who currently has an entire filing cabinet devoted to storing records.

Leeya believes that since her diagnosis her life has changed for the better. She has found a passion in advocating for people impacted by rare disease, especially on social media. She plans to continue her advocacy work throughout college and beyond!

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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.

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