# ‘Make Sure You Find a Support System’ By Catherine Cooke Feb 05, 2021 • 3 min read _Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._ It began in his feet — a slight numbing sensation and then pain that continued to grow. Many people questioned Sherman: “How can you have both numbing and pain at the same time?” And while he couldn’t explain why, he just knew that this was what he was feeling, if only someone would listen. After two years of referrals, tests and constant appointments, a neurologist asked Sherman a life-changing question: “Have you ever heard of CIDP?” CIDP, or chronic inflammatory demyelinating polyneuropathy, is a rare disease that attacks the peripheral nervous system. It attacks the myelin, which insulates nerves, and can cause permanent nerve damage. Sherman describes CIDP “like if you equate the human body to a boat. Your immune system normally tries to protect your boat, but CIDP makes your immune system start drilling holes in the boat instead of protecting it. The more holes it drills, the faster it starts filling up with water, and the boat starts sinking. [Treatment] makes the immune system do what it’s supposed to do ... and the body starts filling in the holes it drilled. But not everybody can fill back in all the holes.” This treatment, for CIDP patients, is called intravenous immunoglobulin therapy (IVIG). Sherman was told that there is no definitive test for CIDP. The only way to determine if he received a correct diagnosis was to start on IVIG and see if the nerves began to get better. While this seemed simple enough, the consequences were devastating. “It's a scary thing for me,” Sherman reflects. “The viscosity of the IVIG is pretty thick, so you have to make sure you drink a lot of fluids, or it can damage your kidneys. It can cause heart problems. It basically knocks you on your butt.” Ultimately, he decided, “I’ve got to do something to get some relief.” Even after several years of treatment, Sherman wasn’t entirely sure how well the IVIG was working until he recently had to go without. A few months ago, he developed an infection and had to go on antibiotics, which can’t be taken in conjunction with IVIG therapy. In only five months of no treatment, Sherman is now barely able to walk. His legs are numb from the knee down, and he’s in the process of getting an electric wheelchair and hospital bed. What frustrates Sherman more than his deteriorating condition is the lack of willingness by the medical community to find treatment. “If you could pick a disease to pick a cure for, you think you’d pick a disease where it costs a lot of money to treat.” At $105,000 per day of IVIG treatment and two days of treatment every three weeks, Sherman says he’s a very expensive patient for his insurance company. Thankfully, he’s found a strong team of advocates working to advance CIDP research by joining the rare disease research platform, [AllStripes](/content/program/cidp/index.html). He loves that AllStripes puts “information into one central place where researchers can go and see all this data ... that’s already been vetted. There’s this wealth of information that AllStripes provides so that these rare diseases, which may be rare but are not unknown.” But Sherman didn’t just join a research platform. He became an AllStripes Ambassador with a network of fellow “zebras,” the official symbol for the rare disease community that’s often used in solidarity. One of the things Sherman most emphasizes to fellow rare disease patients is, “Make sure that you find a support system and be ready for a fight. It becomes extremely overwhelming, but when you see other people in your support system having good days, it helps you to realize, ‘I remember that. Maybe tomorrow will be that day for me.’” ## We know that every person's story is unique and deserves to be heard. Join our early breast cancer registry to be counted and share your story with research. ### 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. ## Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association ### 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. 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. ### 2. Stay organized. 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. ### 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. 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. ### 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. 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. ## Having trouble managing your loved one's medical records? Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth. ### LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021 ##### Data from real-world medical records: (from 13 patients with LC-FAOD) 16 yrs old Median age at enrollment **38% Female** **15 providers / patient** **7.5 years of data / patient** ##### Data from patient-reported outcome (PRO) survey (from 13 patients with LC-FAOD) ## Learn more about contributing to IgAN research with PicnicHealth.