To celebrate Rare Disease Day 2021 (February 28), Takeda is highlighting stories of “Rare Star Resilience” and honoring inspirational members of the rare disease community. Through this campaign, we share the unwavering commitment of five patients, families, caregivers, healthcare professionals and patient advocates who continue to inspire us in a particularly turbulent time.
Rare is strong. Rare is proud. Rare is many. Rare is resilient.
We sat down with Swapna K, who lives with various rare diseases, including Short Bowel Syndrome, to talk about her disease journey and how to demonstrate resilience through advocacy.
A message of resilience from Swapna on Rare Disease Day 2021:
On Rare Disease Day, I share with others what I wish I was told earlier in life: you are your best advocate. You know your story best. Most times, if not all, change does not happen unless you speak up. Don’t be afraid to ask questions, to ask the “why”. Push for your voice to be heard. Don’t be afraid to be the educator, the resource, or the trainer. Your view, your experience is unique, it is different. It is worth celebrating.
I was born with multiple intestinal atresia and subsequently diagnosed with Short Bowel Syndrome on day 2 of life. As an adult, I also have been diagnosed with Post Transplant Lymphoproliferative Disorder (PTLD) and Osteonecrosis of bilateral hips and shoulders. I will always struggle to nourish and hydrate myself solely by oral intake, though I had a small intestine transplant at age 24. I’ve been learning how to eat for the first time for the past seven years.
From birth I received nutrition from a permanent intravenous (IV) line in my chest, a central venous catheter, and a feeding tube in my stomach. I wore two backpacks every day to school growing up – one for academics, one for my enteral nutrition, which came from my IV and feeding tube.
I remember having frequent hospitalizations for central venous catheter infections. I would be in the hospital for a catheter infection at least once a year, sometimes for a week at a time. The process of getting the symptoms of a line infection, going to the hospital, getting on antibiotics or antifungals, going to the operating room to take out the infected catheter and put a new catheter in is ingrained in my head.
Growing up, I was determined to redefine normal. My backpack, my health was part of me, they did not define me, instead they were a driving force to constantly move forward. My family stayed informed of the latest medications, treatments, formulas, surgeries, studies, always trying and exhausting our options – but never losing hope, even when we had to travel two hours away for all of my emergencies, infections, and surgeries.
In my 31 years, I’ve had 65 surgeries, 31 central venous catheters and 25 related infections. I am proud to be infection-free for the last 14 years and counting!
It was a tough year; in addition to the challenges brought on by COVID-19, four of my small intestine transplant peers passed away. The tragedy of 2020, going back-and-forth between grieving for what we have lost in ourselves and lost in others and taking charge of our own joy, hope, and gratitude – it has an eerie similar look to the highs and lows of a chronic disease journey. It seemed like the same sentiments I felt in the last decade was suddenly experienced by the world in one year. Often with SBS, I feel that I am missing out on the fun – but this year we were all in the same boat at home!
Individuals who have a chronic disease and are immunosuppressed have wisdom to share with others on resilience, and on staying safe over anything else. I focused on gratitude and revisited some of the same tools that got me through some of my hardest health obstacles to persevere through much of 2020.
This year in particular has taught me to change my thoughts and be more honest with myself – including that life is too important, and not guaranteed, so don’t be held back by fear and guilt. You can have health and life, they are not exclusive of each other, even if you don’t have perfect health. To always speak up – it is a duty and privilege to shine a light for others. And finally, to be grateful and proud that I’ve made it to this day and for the goals I have accomplished – like that I got my first full time job!
Resilience is keeping energy in the tank for tomorrow and days ahead. As my dad always tells me, “do not just live for today, live for tomorrow.” In my life and for many in the rare disease community, hard days are not isolated and our health outcomes long-term are unknown or perhaps never charted. Our journeys are truly a marathon. We will always have to balance showing up at medical appointments, managing our health, being our best advocate, fighting through crises, accepting grim statistics, and pursuing our pesonal dreams. We can only continue the journey long-term if we stay resilient by thinking about today and planning for tomorrow.
During the pandemic, the community has come together and supported one another through virtual peer-to-peer support sessions, live interviews on social media, and great panel discussions. We’ve quickly changed in-person conferences to virtual ones, and I’ve have seen more online content than ever before.
In May 2020, I joined the EveryLife Foundation as their Rare Disease Legislative Advocates (RDLA) State Advocacy Fellow. I am building and growing their state advocacy and policy program for rare disease advocates. Where you live matters in the quality and type of healthcare you receive and access to resources you have, and there are many policies that can be changed or impacted at the state level. It has been an honor to serve others and increase awareness of state advocacy.
Growing up and living in Alabama, I saw there was a disconnect in how we deliver care and support individuals affected by rare diseases. In 2017, I founded Alabama Rare, a state organization to provide support for individuals and families, educate and bring awareness to the broader community, and advocate for necessary change in Alabama for rare disease care delivery. We have partnered with a local academic medical institution and children’s hospital to host an annual rare disease symposium for the physician, researcher, and family rare disease communities in Alabama.
Tell us about the significance of Rare Disease Day for you.
It means I am not alone. It is a time to celebrate our collective journeys. It also highlights the law we passed in my homestate of Alabama recognizing the last day in February as Rare Disease Day and February as Rare Disease Awareness Month statewide in Alabama, USA. I am proud to speak up and commit to sharing my voice and empowering others to be their best advocate throughout their chronic disease journey.
I believe being more honest and transparent with ourselves is the most powerful action we can take. I hope we can start acting on the lessons we have learned in 2020 in healthcare, diversity and inclusion, and social justice; that we can take those honest discussions and lessons and use them as guides to implement better models in everything we do. I hope healthcare is easier to navigate and treatments are easier to access; that insurance coverage, technological advancement, collaboration, and healthcare system capacity allows us to make sustainable change. Lastly, I hope we can continue to fight our public health and social equity chronic crises – we all have a duty to speak up.
To find out more about Swapna’s story and advocacy work and how to get involved, visit alabamarare.org.