Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.
People often make admiring comments to caregivers of special needs children or adults, saying things like, “I don’t know how you do it,” or, “You are so strong, you are super human!”
Even though these compliments are well-intentioned they highlight one of the huge challenges of being a caregiver — sometimes you don’t feel strong and you don’t feel like you can handle everything. Sometimes you feel like falling apart.
For Emily, that moment came to a head several years ago after a bout of bedbugs hit the home she shares with her son, who has a rare disease called Hunter syndrome. Her son’s nurses called Child Protective Services to see if they could get Emily some help and funds to rid the home of the pests.
But the visit grew more alarming when the CPS worker found Emily drunk — a battle she had been fighting for four years, as she struggled with the pressures of providing Jamie the 24-hour care he needed,
Jamie was removed from her home, and Emily was ordered to seek treatment. She willingly checked herself into a recovery program and reached out to the rare disease community for support.
“I can’t tell you how many messages I got saying, ‘I’m in the same boat’ or ‘I feel your pain’ or ‘I didn’t drink, but I replaced it with some other unhealthy coping mechanism.’ That’s when I decided that that’s part of our journey, and people need to know that it happens. That’s one of the dangers of having a child that requires so much care. You forget to take care of yourself.”
When Jamie was born nine years ago, everything appeared "normal." He was a healthy baby despite some chronic ear infections and respiratory infections, not unlike those that his mother Emily had as a child. His speech was delayed — nothing uncommon for a young boy, the doctors told her. “Boys talk later. Don’t worry about it,” she was told.
But when a night of vomiting brought him to the hospital, everything changed.
After bloodwork, measurements of his head and attention to the curvature of his hands, the doctor suggested Hunter syndrome, which was confirmed by a geneticist one year later.
Emily, who had never heard of the rare disease, is now able to talk about Hunter syndrome in remarkably clear terms: “It’s like his body doesn’t produce the trash trucks that get rid of cellular waste. It’s like if you hadn’t cleaned your house ever, eventually everything falls apart because there’s trash and waste everywhere.”
“It was like I couldn’t breathe,” Emily remembered. “Here was my perfect baby boy, and you’re telling me he’s not going to live past 10 to 15 years. It was like all of the air was taken out of the room. You’re frozen for a moment.”
Plummeted into a new world, Emily did everything to try to get care and treatment for her son, although there are very few current treatments available.
They had a horrible experience with their first geneticist who Emily felt looked at Jamie “more as a science experiment rather than a patient.”
During attempts to join clinical trials, Jamie would often get frustrated with the people performing his qualification tests. After flying all the way to Chicago from Texas, Jamie failed a necessary IQ test by just seven points after acting out with a nurse who kept grabbing his hand during the process.
Through all these challenges, Emily started to turn to alcohol as a coping mechanism. When Child Protective Services finally came to her house, she knew it was time to get help.
Emily is now one year sober and has Jamie back in her home. She has become a leader at her recovery program and her candor and openness are helping others going through similar trials.
“Provide a meal, invite us to things,” she suggests to others as ways to support the caregivers of individual with special needs or rare diseases.
And she encourages the caregivers “to breathe, to be kind to [your]self, to reach out instead of isolate, to find your tribe within the disease community.”
Emily has joined AllStripes to further “find her tribe” and connect with others in the Hunter syndrome community.
“AllStripes is going to create a great resource of information for people who are doing studies and for families to connect to with other families, as well as have easy access to medical records, because sometimes that’s like pulling teeth.”
Emily’s mindset is to “share Jamie with the world” and share her story of the importance of taking care of yourself as a caregiver. “Taking care of yourself is something you have to make a priority. If my story can help someone before they self-destruct like I did, then by all means, I am 100% okay with sharing it.”
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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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