Every Bruise Could Be Deadly for This Adventure-Lover With the Rare Condition ITP

By
Catherine Cooke
Dec 12, 2019 • 3 min read

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

Fred was “living in la-la-land,” according to his wife Cynthia. He skied, hiked and enjoyed the outdoors as much as possible. Physical activities were a major part of what fueled his interactions with people and contributions to his community.

But one day, something changed.

Doctors can’t figure out why, but something triggered his immune system to mark his platelets as bad, which causes his own body to destroy them.

Fred can now bleed out very easily and can no longer do anything where he’ll get a bad bruise. Almost overnight, his once active and social life became much more isolated.

“I’m tied to my medical facilities right now. If something goes way down, I’m going to have to go in and get platelets ... In the last year, it’s not quite so livable,” Fred reflects.

A doctor’s ‘problem child’ patient

His rare disease, idiopathic thrombocytopenic purpura (ITP), has no cure, and the treatments that have shown success in some other patients — medication, platelet transfusions, and surgery for spleen removal — have sadly not helped Fred long-term. His doctor has jokingly, yet truthfully, deemed him his “problem child” because of the trouble they’ve had finding relief for Fred.

“I’m about out of options to be very honest with you,” Fred shares. “I keep looking and looking, and there’s nothing out there as far as another drug or treatment plan.”

He was hit hard when one medication led to two heart attacks. Often times with rare disease, doctors don’t know how patients will react to medications or even the proper amounts to give. Treatment can be very experimental when the options are so few, making Fred “feel like a guinea pig.”

Information is power

Although he has come to a standstill in his medical treatment, Fred continues to dig for new options. His search led him to AllStripes, a platform that makes it easy for patients and families to contribute to drug research from home to power faster, better drug development for rare diseases:

“AllStripes is trying to open some doors that need to be opened. I’m still not defeated as far as throwing down the towel and saying ‘I quit. I give up.’ There’s things out there. There are promises out there.”

AllStripes collects and de-identifies medical records, then works with researchers to design better clinical trials with faster outcomes and a higher chance of success. Fred was particularly intrigued with the prospect of gaining higher-level insights into his disease by aggregating ITP patient data:

“The more information you have, the more power you have...that’s what I’m trying to do— give [doctors] more information so that some place down the line they can link things together.”

Making room for adventure and giving

Despite all the devastating challenges and setbacks Fred has had in his medical journey, he continues to count his blessings:

“Fortunately, I have a faith that keeps me going, and I have a wonderful wife that keeps me going. Life is precious. Handle with prayer. That’s kind of one of our thing around here.”

With no children of their own, Fred and Cynthia have been sponsoring four children in Peru through Compassion International, and they have a trip planned next spring to meet the children who have helped them “put life into perspective.”

It’s risky to take a trip like this, but Fred is determined to “not [give] up certain things in my life that mean more to me than taking a chance a little bit on going someplace and seeing something I desperately want to see and meet.”

Above all, Fred lives a life of “look[ing] for positive things out there. I can’t change the past. I can look forward and hopefully grow in the future.”

His wife Cynthia encourages everyone to, “Do it now! Do everything you can now while you’re healthy ... Live every day to its fullest.”

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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.

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.

Together, we can make a difference.

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.

2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order.

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.

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.