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Meet Matthew. He’s 11 years old, and while he doesn’t know what he wants to be when he grows up, he does have a few ideas — an Olympian, professional wrestler, mixed martial artist, a lawyer or maybe a business owner. His parents are both doctors, so he’s used to them working long hours. But that’s not the only reason Matthew has spent a lot of time with his grandmother.
Matthew’s brother, Michael, is 12 years old and loves to swim. He also has an ultra rare disease called kaposiform lymphangiomatosis, or KLA. He first began experiencing symptoms of the disease when he was 5 years old, but didn’t receive a diagnosis until a few years later. While Michael was going through his diagnostic journey and traveling long distances with his parents to see countless specialists, Matthew would often stay with their grandmother.
It was six years ago that a head injury put Michael in the hospital and ultimately led to him getting diagnosed with KLA. This experience means Matthew and Michael’s mother has some anxious feelings whenever they get into brotherly tussles. “She gets too nervous,” Matthew says. “She thinks Michael’s head is going to explode and we are going to have to go into the ER.”
Matthew remembers that day when his brother bumped his head. The family was on vacation and the two of them were playing when it happened. As the family rushed Michael to the emergency room, Matthew knew something was very wrong because Michael was screaming and crying. Matthew says he wasn’t scared because he “didn’t even know what a rare disease was. I thought he just hit his head or something and got banged up.”
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KLA is an ultra rare condition in which lymphatic vessels develop atypically and can invade and cause damage to surrounding tissues, bones and organs. When Michael hit his head, the trauma from the injury caused him to become seriously ill and in need of blood transfusions. After eight days in the hospital, undergoing many tests, procedures and being poked and prodded, Michael received his diagnosis. Matthew says he was jealous of the food that Michael got to have in the hospital, like pizza and Jell-O. On the other hand, Matthew stayed with his dad, Greg, at the hospital hotel in the evenings and got to eat cafeteria food and candy bars from the vending machine.
Matthew also remembers his brother having to go to many different medical facilities over the next few years, and that sometimes he tagged along. Kimberley, Michael and Matthew’s mom, remembers the time at the National Institutes of Health when Michael played a joke on Matthew by putting his own name tag on Matthew’s back — hoping that Matthew would be the one who had to get blood tests done. Matthew doesn’t remember this, but upon hearing the story, he smiles and says, “Michael was a mastermind from the start.”
These days, Matthew sports a zebra headband that he is rarely seen without. He got this headband from a toy box at the hospital during one of Michael’s many appointments. At the time, Matthew didn’t know the zebra’s significance to the rare disease community. Now, he basically never takes it off. “This headband right here has been my companion.”
His piece of advice for other kids who have a sibling with a rare disease? Stay strong — and don’t give up.
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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.
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.
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.
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
Learn MoreWhen 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.
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.
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.
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.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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