What's New at Rare Patient Voice?
Real & Rare with Sarah: Make Time for You
RPV’s Marketing department was recently joined by a summer intern through a collaboration with Rare Revolution Magazine! Sarah Nesheim is a patient advocate who lives with a rare disease herself. “I am extremely passionate about advocating for patients and their families. During my time with RPV, I hope to learn and grow alongside each and every one of you. My goal is to make a lasting impression within the patient and client community through my writing of personal and professional experiences,” said Sarah. In her latest blog for RPV, Sarah is tackling an important topic: self-care.
As someone who has been living with a rare disease diagnosis for eight years, I often get asked this one question over and over again: “What advice would you give to someone who is newly diagnosed?” My answer has varied over the years, however one thing that might be overlooked is the concept of self-care.
When you are first diagnosed, and to be honest all throughout this patient journey, we feel a range of emotions. We are quickly thrown into this new world with absolutely no clue how to survive in it. You lose your sense of self and have no idea if you’ll ever find your way back again. Suddenly, the life that you had created for yourself and the path you chose to be on is taken from you.
To give you some personal context, I was diagnosed at 28 years old. I had just finished grad school and was ready to start my career as a mental health therapist. With one phone call my life was no longer about creating my own life, it was about saving it. Instead of dressing up to go out on dates, I was forced into a hospital gown. Instead of signing a job offer, I was signing treatment consent forms. I was told what time to show up to appointments, what treatments to receive, what pills to take and how many times per day. I was told several things by my doctors, by nurses, by my parents and friends. Do this, do that, try this, avoid that. This was no longer my life. This was no longer me.
It took me a long time to find my voice again and learn how to use it. Seeing a therapist was my first tool that helped me process my diagnosis and slowly start to rebuild my sense of self. It’s important that we all figure out what works best for us. One size does not fit all here. My self-care routine is practicing yoga, going for walks, visiting friends, seeing my therapist, and writing, to name a few. It is so important in this busy world that we slow down and really listen to what our minds and bodies need. Do something that brings you joy. My diagnosis has helped me slow down and appreciate the little things in life, that are actually the big things. I would encourage you to find your own self-care routine that fits for you. I believe that in taking these steps, we can start to rebuild ourselves and take back the little pieces that were lost along the way. What is just one thing you can do for self-care today?
New on the Bookshelf
This month, RPV’s President Wes Michael reviews On Fire: Reflections on a Journey Through Life with Parkinson’s Disease, by A.C. Woulnough.
I prefer books with short chapters, maybe because I usually read a few pages each night before I fall asleep, and I love it when I can stop at the end of a chapter. So A.C. Woolnough's book, On Fire: Reflections on a Journey Through Life with Parkinson’s Disease, was a perfect read for me. A.C.'s book is a collection of essays that originally appeared in newspapers and magazines, so each chapter is a short, focused, self-contained article.
In case you are wondering (I was, so I asked A.C.), Woulnough is pronounced "wool - no."
These are all great stories. They are not necessarily about Parkinson's Disease, that insidious movement disorder that affects so many, as they are about A.C.'s life and how Parkinson's has affected him. It's great to listen as he relates going to conferences, sharing his blood, and studying research proposals that he only partially understands to help award dollars for research. Or petitioning Congress for more spending on the disease - through the unlikely channel of the Department of Defense! But his stories about people - his father, his wife, his son, and grandson, other PD warriors, and genius medical researchers - are what captured me the most. After all, that is what I like to read about most - people and their lives.
Did you know that many Parkinson's patients lose their sense of smell years before they are diagnosed with PD? It makes me worry - so many have lost their sense of smell from COVID - could Parkinson's be in their future?
The good news is that A.C. is planning a second volume, Still on Fire, to come out next year. I can't wait! To find out about ordering a copy of On Fire, please email A.C. directly at acwooly@gmail.com.
Wes
Partner Corner
June is Hidradenitis Suppurativa (HS) Awareness Month. Do you know anyone who is envious of others' armpits? For those of us who suffer with HS, jealousy over armpits can be commonplace! Brindley Brooks, founder and executive director of HS Connect, didn't share her debilitating skin condition with many people until electing to undergo surgery for her HS. It was at that point she decided to open up about her condition after 25+ years of silence. It was during this journey and recovery that she met her co-founder, Denise Fixsen. Together they saw the need for a platform for those impacted by HS, including the medical community who treat us. HS Connect, a 501 (c) (3) non-profit, contains all of the information you could ask for including articles, product suggestions, dermatology recommendations, research, open clinical trials, surveys and studies, kids and adolescent section, and mental health resources.
Hidradenitis Suppurativa (HS) is a debilitating, chronic, complex inflammatory illness, also referred to as an immune-mediated inflammatory illness and follicular occlusion. It has a huge impact on quality of life physically, mentally, and emotionally. HS consists of extremely painful recurring abscesses that can develop anywhere hair follicles are found (there does not have to be hair growth). It is possible to experience abscesses or lesions anywhere on our body with the exception of the palms of your hands, soles of your feet, and the red part of your lips.
To learn more about HS Connect, visit www.hsconnect.org.
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Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.
How will I be paid?
You will earn $100 per hour for participating in studies. We pay by check to ensure patients can use their compensation in any way they wish.
About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients over $10 million dollars since 2013 for participating in research studies.
