Walking through life with salt-wasting congenital adrenal hyperplasia (CAH) brings its own set of ups and downs. For Taylor and her son, Maddox, it’s a path marked by sudden storms and sunny days, a mix of medical emergencies and moments of pure childhood joy. Here’s their story, told with the warmth and honesty that Taylor brings to every conversation.
When Life Took an Unexpected Turn
Recalling one of the toughest days, Taylor shares, "The day we rushed Maddox to the hospital changed everything. Seeing my baby in that trauma room was a wake-up call to a reality I never expected." It was this scary moment that thrust Taylor into the world of CAH, turning her into both a caregiver and a fierce advocate overnight.
Every Day with CAH
"Managing Maddox's CAH is a bit like walking a tightrope," Taylor says, capturing the constant balance between normalcy and vigilance. Maddox’s spirited nature shines through, painting him as the playful, unstoppable kid he is, even when CAH throws a curveball their way. Taylor's own journey through anxiety and PTSD reveals the silent battles parents face, a reminder of the courage found in simply facing each day.
Sparking Change Through Advocacy
Frustrated by the lack of awareness around CAH, especially in critical emergency care, Taylor didn't just hope for change; she sparked it. "After battling misconceptions and educating our local EMS, we finally saw progress. It’s about making sure no family feels as lost and scared as we did in those first days," she explains. Taylor's fight led to significant protocol changes, a testament to her determination to improve CAH awareness and care.
The Power of Community and Family
In this journey, Taylor's mom and aunt have been her rocks, offering a shoulder to lean on during every crisis. "Having people who show up for you, no matter what, makes all the difference," Taylor reflects, acknowledging the complex web of support that keeps them going. Beyond family, Taylor has found an extended family in the CAH community, where shared experiences forge instant connections.
Looking Forward with Heart and Hope
Taylor dreams big for Maddox and for the CAH community. From challenging EMS protocols to envisioning a nonprofit to support families like hers, she’s all about taking action. "Maddox taught me how to fight, not just for him but for every kid facing CAH. We’re in this together," she says with a mix of resolve and warmth.
Through Taylor and Maddox's lens, the journey with CAH is not just a medical story; it's a narrative of growing through challenges, the love that pushes boundaries, and the community that bands together to make the road less daunting. Their experience underscores why registries such as [CAHtalog] are crucial for sharing these stories, shining a light on the realities of living with CAH and the power of standing up for change.
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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.
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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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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
