After 14 years of countless doctor’s appointments and surgeries, Lindsay finally received a diagnosis of CLOVES syndrome. CLOVES is a rare type of PIK3CA-related overgrowth spectrum (PROS) disorder that causes certain parts of the body to grow large.
When she received her diagnosis, Lindsay felt excited — an emotion not typically used to describe someone’s reaction upon being diagnosed with a rare disease. But Lindsay explains that she had been searching for an answer to her physical symptoms for her entire life, and was ready to finally meet other people like her.
Growing up, Lindsay certainly had her fair share of hardships. As a child with physical differences, middle and high school were a difficult time for her. “People were always staring,” Lindsay recalls. She remembers the frustration of not being able to wear what she wanted to. “I could only wear one type of tennis shoe, and it was like the ugliest thing in the world,” she says. “It was hard going to school and seeing people who could dress how they wanted to dress.”
Lindsay admits that during her younger years, all she wanted was to fit in with her peers.
“I wanted no attention,” she explains. She says she was able to get through this difficult time in her life with the support of her family and friends, and eventually the CLOVES Syndrome Community, for which she now serves as a Family Advisory Council member.
By the time she entered college, Lindsay had begun to feel more comfortable with having CLOVES. Looking back, she says that during high school she never thought she would be in a romantic relationship and assumed no one would like her because of the way she looked. “Eventually, I have learned to embrace who I am.”
Lindsay has been with her current boyfriend for over two years and explains that they have honest conversations about her disorder and its potential future complications. Knowing what she knows now, she wishes she could tell her younger self that things would eventually fall into place.
Today, it’s been over 10 years since Lindsay received her diagnosis and she’s been able to watch the CLOVES syndrome community grow firsthand.
“I’ve seen the progress with my naked eye,” she marvels. Lindsay also says she is gratified to see more funds directed toward CLOVES research. She is currently enrolled in a clinical trial to try to help find a treatment.
Lindsay is also thrilled about the launch of the PROS research program at AllStripes, which will centralize knowledge about the condition to power multiple future studies. She believes the patient perspective is critical to focusing research efforts, and glad AllStripes helps connect patients with the research process. With more research, Lindsay is confident that accessible and affordable treatments for CLOVES syndrome patients are within reach!
When she attended her first CLOVES Syndrome Community conference in 2016, Lindsay notes there were only around 10 attendees, but that at the most recent conference there were over 100. She loves watching her community grow and come together.
Over the years, Lindsay has had a lot of parents look to her as a positive role model for their children with CLOVES. “It’s nice to be able to be someone who can answer their questions,” she says. She hopes that her example will show others that it is possible to live a happy life with CLOVES syndrome.
Lindsay understands that awareness and advocacy make a huge difference in the rare disease community. A few years ago, she started a blog to help raise awareness of CLOVES syndrome and document her journey with the disease. “It’s such a huge part of me. I find it really important to be involved in the community,” Lindsay says.
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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.
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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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