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

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!”

At the age of 46 I was diagnosed with high grade, non-muscle invasive bladder cancer. The diagnosis rocked my world and sent me on a journey to find resources, particularly content on the patient experience for bladder cancer patients. I didn’t know anyone in my life who had bladder cancer. I had never even heard of it myself. I decided to start my own video blog on TikTok, and what I found was a community of bladder cancer patients all looking for the same things - a place to sit together in our shared experience and a sense of hope - that there are legions of survivors living active lives after treatment!

Today I continue to navigate maintenance treatments and share content on patient experience and emerging treatments in the bladder cancer space. The bladder cancer journey is a long one - some patients remain in maintenance 5 to 10 years. So I choose to celebrate the small victories along the way. My favorite way to celebrate is by dancing to show cancer that life goes on!

Hi my name is Jennifer, 24-year lupus warrior diagnosed with Neuropsychiatric Systemic Lupus Erythematosus (NPSLE), along with other autoimmune conditions and hereditary amyloidosis. My health challenges have been extensive and life-altering.

At the height of my life, lupus led to the loss of marriage, career, and financial stability. I also faced severe, medically induced hypertension, resulting in repeated hospitalizations and persistent lupus flares. Determined to understand my condition, I began researching the link between lupus and hypertension, which inspired me in 2014 to start The Lupus Rainbow in Kissimmee, Florida.

Throughout my journey, I’ve have been a strong advocate for quality healthcare. Navigated five different healthcare systems, fighting for my life and for patient rights while holding medical providers accountable. Eventually, I found a system committed to attentive care and innovative treatment options.

Hi, I'm Danita LaShelle, a professional writer, storyteller, and writing strategist, with an emphasis in logistics and creative communication. At my core, I'm a theatre kid who loves telling stories of the unheard and overlooked.
At my core, I'm just a theatre kid with a great husband and four amazing kids. In 2021, after a nearly four-year journey to a diagnosis, I embraced being a caregiver and patient advocate for our oldest daughter, who lives with HAE with normal C1-INH. My philosophy is that the more we talk about HAE, the better chance we have of making this rare disease a common topic of conversation.