Updated: Jan 25
Whilst living with a rare disease, Kendall found a nurturing environment whilst interning for ACMCRN. She writes about her time interning, the valuable skills she learned and how this progressed her opportunities for her future career.
Being a rare disease patient infiltrates reality with relentless complexity-things most people unaffected by rare disease are never subjected to consider.
Not only do we balance all the requisites of living, but we also juggle doctor appointments, treatments and therapies, trips to the ER, hospital stays, pain, flares, symptoms, worsening of symptoms, isolation, stigma, ignorance, inexorable search of desperately needed help... I could continue for, what would be to most, a surprising amount of time.
As we navigate life on this multifaceted balance beam, milestones continually take place. One major life milestone at the forefront of every young adult’s mind is their career. It is the terrible reality that our bodies are not prohibitive of attaining careers; rather, it is the judgement and ignorance at the hands of companies that are the gatekeepers. My story is not uncommon from the millions of rare disease patients who have also experienced discrimination in pursuit of their ambitions. This is the precise reason why finding and participating in this internship has been such a life changing experience. The Rare Youth Revolution (RYR) internship not only advances your skillset and preparedness, but it also puts you in contact with an expansive network of incredible organisations and communities that prioritise your lived experience as a rare patient.
This past summer, I was selected as the research intern for the Arachnoiditis and Chronic Meningitis Collaborative Research Network (ACMCRN). As someone with Ehlers Danlos Syndrome, a leading contributing cause of Arachnoiditis, I was elated to begin crucial work that involved my own rare disease. In my role, I processed innovative research data and created an abstract, which is due for presentation at numerous future conferences. Separate from making the poster, I also researched various existing treatment protocols and produced an evidence-based bibliography for patients and professionals to reference. In addition to research endeavors, we are concurrently producing the first global patient registry! Having an established registry will accelerate innovation and, ultimately, provide the platform for desperately awaited scientific discovery.
ACMCRN fosters an inclusive and understanding environment where I feel, as a person with a rare disease, safe to "be a patient."
This organisation leads by modeling a heightened level of understanding and commitment to patients, caregivers, science, and providers, alike. These qualities are integrated into our core mission, exemplified not only through workspace inclusivity, but also in the heart of how we care and provide for our community. Because ACMCRN was founded by an amazing woman living with arachnoiditis, and everyone working there also having a chronic illness or a connection to rare disease, the organisation’s culture is founded upon compassion, flexibility, patience, and understanding. All colleagues extend authentic care and concern and truly support one other as well as the greater cause.
A particularly beneficial accommodation ACMCRN offered me were soft deadlines. Adaptable goal and deadline setting permits space for chronic illness to rear its unpredictable head, as it so predictably does. Having experienced ongoing health challenges throughout my internship, this principle was of paramount importance to my success. I am so grateful to feel secure and supported by this organisation, and I’m honored for the opportunity to stay on indefinitely.
As a future physician-scientist, the experiences gained throughout my internship are truly invaluable.
My life’s greatest mission is to make contributions and discover curative therapies for rare disease patients, particularly EDSers and Arachnoiditis warriors. In pursuit of that, working to disseminate novel findings to our disease community was the biggest honor and thrill for me. With our dedication to scientific and advocacy missions, I have no doubt our future study will bear monumental impact to millions of patients across disease affiliations.
I am sincerely thankful to Rare Youth Revolution and ACMCRN for this outstanding internship!
I cannot string enough superlatives together to properly articulate my excitement and gratitude. I am so overjoyed and appreciative of the opportunity to originate my scientific career with this organisation. I know I’m where I’m meant to be and it’s certainly credit to RYR for offering this internship in the first place.
To young adults considering applying: you belong here! Your incredible and distinctive experience as a patient is of utmost importance and value to the organisations seeking interns. You are not only safe to be a patient, but, more importantly, you are genuinely encouraged to be a patient. The practical experience and connections you form have the potential to lead you in the direction of your lifelong career, or right to it—just as they did for me! Spearhead your career and forward your applications as soon as you are able!
As a fellow zebra, I wholeheartedly recommend the Rare Youth Revolution Internship Program!