Patient Leader Certification: What's Your 60 Second Pitch?

My name is Kathy and I'm a community experience coordinator for HU. I love my job and am taking the Patient Leader Certification program so I can be more effective in how I support our community members online. As I moderate on the sites that I've been assigned, I try for a true connection to each community member who has posted. I don't always have a personal connection with that particular illness (although I do for many of them). I feel that it's important to help the posters feel seen and heard. They are certainly experiencing something challenging for them, or they'd be watching Netflix instead of sharing their experience with us. Whether they are having a crisis of sorts and need support or looking for information, I'm in a place to help them out! Across my communities, I have realized that our community members struggle with similar things: fears and shock at diagnosis, doubts about treatment, struggles with support and understanding from loved ones, loneliness, and medical gaslighting. By guiding them to resources on our communities, I believe, I can make their healthcare journey a bit smoother.

I’m a long‑time advocate and Patient leader who uses my lived experiences to educate, empower, and support others. Over the years, I’ve advocated for a wide range of issues from ending violence against women and pushing for stronger domestic‑violence laws, to raising awareness about chronic health conditions like hypothyroidism, osteoarthritis, osteonecrosis, MTHFR, and Factor V.

My work includes founding an international support group for people with avascular necrosis, serving as an Arthritis Foundation facilitator, and creating online spaces where people can learn, connect, and find their voice. My passion is helping people understand their conditions, access resources, and gain the confidence to advocate for themselves. At the heart of everything I do is a commitment to making sure no one feels alone in their health journey.

Where do I begin? Is it childhood where I remember laying on the cold basement floor because it made my head feel better? Do I begin during adolescence when I continuously wondered if I was feeling normal? When I was diagnosed with chronic migraines? Or maybe our story begins 10 years ago when diagnosed with seronegative inflammatory arthritis. I woke up one morning and could barely walk while attempting to care for our 4 young children.

Maybe I start our story with COVID. My biggest fear coming true. Our daughter developed her first genital ulcers and three years later was diagnosed with Behcet’s. You see, our story is long and complicated like so many others. All 4 of our children and I have autoimmune diseases, chronic illnesses, migraines, connective tissue disorders, or a combination. Automatically Autoimmune. I started my social media accounts after losing my job due to illness, appointments, emergencies, you name it. This is our life. Navigating this world. This is what I know and my passion. Because our children are my passion.

I am the patient. Caregiver. Advocate. Nurse. Insurance mediator. Secretary. And I will never stop because my children need me. The world needs more information, more empathy, more kindness, more awareness. And while we live in this world day in and day out…we choose sunshine. Because our story may just be someone else’s survival guide. My name is Melanie Salmon, and our family is Automatically Autoimmune.

#PatientLeaderCertification!

Hi my name is Alexsaundra Faith Lane “Allie” and live with Myasthenia Gravis (MG) and Hashimoto’s Thyroiditis. I am AChR+ and MuSK+ for MG. I was officially diagnosed with both diseases in June 2016 at 24 years old. Looking back, my MG symptoms began in late 2014/early 2016. Initially, I was dismissed and told it was anxiety and stress related due to being a full-time college student, a wife, mother to a then 4 year old daughter, and working part-time. However, I knew that was not true as I was rarely ever sick outside of the occasional cold. I was then misdiagnosed with Fibromyalgia. The journey to my official diagnosis took roughly 1.5 years. I will forever be grateful to Jill Lyle my pain management nurse in Starkville, MS, for her referral to Dr. Ruth Fredericks, Neurologist at St. Dominic Neuroscience Center in Jackson, MS, who without a doubt was confidant in my diagnosis based on my symptoms, did the bloodwork, and reassured me that she would do all she could for me.
I was in school studying to become a Social Worker, but had to withdraw with roughly 9 hours left in the program due to the progression of the disease and frequent hospitalizations. While MG may have derailed my plans to become a Social Worker, I still find myself advocating for myself and others in the MG community as well as raising awareness about this disease by sharing my story on social media. In doing so, I landed a branded and educational social media campaign with Health Union for Rystiggo, one of the treatments I’m on for MG.
I am in several online support groups for MG and as a community, we lean on one another to share our challenges as well as to get feedback about certain treatments and medications.
While I would not have chosen these diseases for myself, people reaching out to me letting me know that I inspire them or wanting to know my experience with MG, lets me know that the challenges I have faced and continue to face are not in vain. I often say that “my muscles may be weak, but my faith is strong!”