In 2017 my life was saved by a stranger through the miracle of organ donation after my liver was destroyed by an incurable autoimmune disease called autoimmune hepatitis type 2.
This wasn’t the first time I had come close to the edge, though. Depression and mental illness have been part of my battle and journey to survive after being given my life-altering diagnosis at 17.
A doctor told me I had an incurable disease that had caused stage 4 cirrhosis (end-stage liver disease). I would be on medication (including steroids) for the rest of my life. I would never be able to have children. I would never be able to get life insurance. I was told not to drink, and by 30, I would need a liver transplant, or I would die.
This diagnosis devastated me. The life I had planned out was now obsolete due to the medication I would be on. The chances of me having a family and an everyday life were gone. So as I left the hospital that day, I decided I would try never to have regrets. ‘Carpe Diem – Seize The Day – Live every day as if might be your last, became the force that kept me going through the years that followed.
The symptoms of the disease combined with the side effects of the medication led me to massive weight gain and the onset of anxiety and depression. As my liver was unsavable, I decided to embrace life and lived a rather hedonistic existence, not caring if I lived or died. I believed I was intrinsically worthless, broken and a failure.
I wasn’t worth saving, and so a transplant wouldn’t happen for me. I didn’t deserve one.
But by 15 years later, at the age of 32, I had started to change my mind, and I didn’t want to die. I realised that I shouldn’t have been told what I was, the way it was. I should have had support. Things could have been different. I wanted things to be different. I made a vow.
I will not stop until children grow up knowing about organ transplants, and organ donation is the norm, not out of a legal law, but out of choice.
“My life was saved by a young lady who died of brain stem death. I don’t know if she had chosen to be an organ donor or her family made that decision. But I have a rare blood type, and without their choice, I could quite easily be dead.
I can never thank her or them.
Instead, I will aim to help reduce the shortage of organs available by working to improve education.”
My first children’s book, available on the Kindle is called, ‘Lucy’s Liver Transplant – A Story About Organ Donation’ and is now in 8 languages.
Manish is a 28-year-old PhD researcher and lives in India. He suffered from FSGS/Alport Syndrome, that led to progressive chronic kidney failure. Thankfully, Manish had a kidney transplant in December 2020 after his father donated his kidney to him. The suffering finally culminated into a blessing! He is enthusiastic about creating awareness and support as well as educating rare disease, kidney disease and transplant communities. He is an avid health blogger and has recently started Doting Beans, an online awareness and support blog/platform for kidney disease patients and transplant recipients. Manish also supports initiatives such as organ donation and mental health awareness. He is associated with the Organization for Rare Diseases (ORD) India as a rare disease advocate and Zifcare, India as a mental health ambassador. In addition, he is a patient ambassador at Alport Syndrome Foundation, USA and research network volunteer with Kidney Research UK. Through his journey, Manish has realized the importance of accurate & timely diagnosis and need to develop effective methods for treating rare and chronic kidney diseases. He envisions to implement this through his prospective plans of a research career in the field of Bioengineering.
After a lifelong struggle against a rare, metabolic disease, Alisha received a liver transplant in 2020. Immediately she saw needs in the system and desired to give back to the community that gave so much to her.
Thanks to the generous gift of life from not one but two donors, Alisha has begun what she calls the beautiful second life. She is the creator of the radical transplant movement, empowering patients to live out their radical truths as they live with illness. She is a certified 200hr yoga instructor, a trauma and grief doula, writer, speaker and embodiment coach living near the Rocky Mountains in Alberta, Canada with her family.
I’m Tina B and I was born with heart disease, pulmonary hypertension and other problems. The outlook for my future wasn’t a positive one. My parents were told that if I managed to live to be a teenager it would be a miracle. I am now well passed my teens and living an incredible life! As the longest living survivor in Africa to have had a heart and bilateral lung transplant, I have looked death in the eye and defeated it! With my proven strategies we can get you to your most incredible life too!
Who am I?
My name is Daniel or Dan and I have type 1 diabetes. I was diagnosed at the age of 10 on 17 August 1996. I live just outside London.
Where am I from?
My family are from the Caribbean however I was born in London and have lived in the UK all of my life.
What do I know about type 1 diabetes?
I’ve been living with type 1 diabetes for over twenty years and have first hand experience of the highs, lows and very lows the condition brings to a persons life.
What’s my diagnosis story?
Everyone who experiences a type 1 diabetes diagnosis has their own story. You could be the person with type 1, their parent, sibling or grandparent. You have your own individual story. Here’s mine.
It was the summer of 96 (enter a poor Summer of 69 joke here) and 10 year old me was enjoying the summer holidays. It was a ‘hot’ British Summer and the Ribena was flowing so I kept drinking and drinking and drinking. It was hot so nothing was thought of it by those around me. This all changed on 16 August. I was on a family trip to the cinema and we had to leave early due to me being unwell. I continued to be unwell for the rest of the day.
Fast forward to 1am on 17 August 1996 and I was still unwell. The emergency doctor was called. After he arrived, tested my blood sugar levels he said, you need to take him to Accident and Emergency. Now!
I didn’t know what was happening but when we reached the hospital, I soon realised. I remember needles and lots of poking, prodding and waiting around. It was early morning now and a doctor sat me down and said, ‘You have Diabetes’.
I don’t remember what was said after that but those words and the image of the doctor still stays with me until this day.
I stayed in hospital for a few days, the highlight being interviewed by a news channel about my diagnosis. Then I was off continuing my journey of living with type 1 diabetes and navigating this thing called life.
I’ve come a long way since then and overcome many challenges. I’m still on my journey and if I can get through it then I know you can.
Finally, as you have read I’ve had type 1 diabetes for a number of years but I am not the following:
– a ‘perfect’ type 1 diabetic (This does not exist!)
– an expert in managing the condition
– a healthcare professional.
Elizabeth was diagnosed with cystic fibrosis at 4 months old. The youngest of three, and the only child with CF, Elizabeth’s health began to decline during her sophomore year of college, causing her to withdraw from school and move home. Three years ago, Elizabeth moved to the Bay Area to focus on her health. Despite the progression of her disease, Elizabeth enjoys traveling, photography, reading, and buying too many sweaters for her little dog, Tucker. Double-lung transplant survivor with cystic fibrosis. Public speaker and advocate. Keeping it salty 24/7 while showing the good, the bad, and the ugly with sarcasm and humor.
Doctor Mark A. Hardy is Auchincloss Professor of Surgery, former Vice Chairman and Residency Program Director of the Department of Surgery, and Director Emeritus and Founder of the Transplantation Centre, Columbia University College of Physicians and Surgeons and NewYork-Presbyterian Hospital in New York City. His professional scientific career has revolved around transplantation and transplantation biology, with a major interest in alteration of donor immunogenicity, antigen presentation, and islet transplantation. He is a former Director of Vascular Surgery and Founder of the Transplantation Program at Albert Einstein College of Medicine in New York. In addition to his work in transplantation, in the earlier part of his career he made several contributions to the development of prosthetic vascular grafts and the development and study of biologic function of thymic hormones, both experimentally and clinically. He is on the Scientific Advisory Board of Hallym-Columbia International Surgical Education Fund, which he helped to create to support international exchanges of faculty between underdeveloped and developed countries.
Besides being a very busy general, vascular, and most recently primarily a transplant surgeon, he continues basic research in immunology trying to achieve tolerance to organ allografts in swine. Among his many honours and almost constant support by NIH funding for his studies, Dr. Hardy was President of the American Society of Transplant Surgeons (ASTS) in 1994, served three terms as Councillor of the Transplantation Society (TTS), and was an Editor of Transplantation for 15 years until 2015. He has published more than 380 articles and edited Xenotransplantation 25 (First International Xenotransplantation Symposium) and another book on Organ Replacement in Diabetes Mellitus. He is a member of numerous surgical and scientific societies including American Surgical Association, Society of Clinical Surgery and American Association of Immunology. He has received a number of prizes for his work, including the NIH Scholar Award early in his career.
He has been awarded Honorary Doctorates at Hallym University in Korea and at Warsaw University in Poland and was named Distinguished Alumnus of Albert Einstein School of Medicine and of Columbia University Medical Center/NewYork-Presbyterian Hospital. He has received numerous awards including the ASTS Pioneer Award and Francis Moore Mentorship Award, and The Shustra Prize in Immunobiology from India. He continues to focus on issues in surgical education and international health care, in addition to his research in tolerance induction.
We invite you to meet the 2021 Lyfebulb-CSL Behring Innovation Challenge Award winner and members of our esteemed jury as part of Lyfebulb’s virtual Fireside Chat Series.
Join us for a dynamic conversation, lightly moderated by Lyfebulb CEO Karin Hehenberger, MD, PhD, highlighting the importance of entrepreneurship, how lived experience can spark innovation, and the impact of patient-driven innovation on the transplant community as a whole. The discussion will also explore today’s research landscape in the field of organ transplantation, innovations on the horizon, and what looks most promising for patients.
Please register below if you are interested in learning about the impact of entrepreneurship and innovation on the transplant community and how individuals with a personal connection to transplantation have been inspired to help others with innovative solutions for improving patient health and overall quality of life.
Dr. Minnie Sarwal of NephroSant has been selected to receive the $25,000 Innovation Award
NEW YORK, NY, USA – May 14, 2021 – Lyfebulb, a patient-empowerment innovation accelerator that bridges the gap between patient communities and the healthcare industry, and CSL Behring, a global biotherapeutics leader driven by its promise to save and improve lives, are excited to announce that Dr. Minnie Sarwal of NephroSant was selected as the winner of the Lyfebulb-CSL Behring Innovation Challenge: Thriving with Transplantation.
NephroSant will receive the $25,000 monetary award to further develop diagnostic tools for early detection and lifetime monitoring of kidney health and injury, including a non-invasive transplant rejection test designed specifically for kidneys. Biohope Scientific Solutions received an honorable mention for its research and development of precision medicine in vitro diagnostic tools for chronic inflammatory conditions with the goal to optimize the immunosuppressive therapy in patients with kidney transplantation and in the future for other autoimmune diseases.
“It is inspiring to experience the innovation and passion these eleven finalists brought to this event and we look forward to seeing their products penetrate the market and help patients, their care partners, and their care teams generate better outcomes throughout the transplant journey. There is a huge unmet need in this market that patients and care partners know so well – to my family and me, it goes beyond the business and admiration for technology – as a double organ transplant recipient, it is also personal,” said Karin Hehenberger, MD, PhD, CEO of Lyfebulb.
The 2021 Innovation Challenge took place virtually over two days on May 12-13 and was open to entrepreneurs motivated by a personal connection to organ transplantation developing new products and solutions to help organ transplant recipients, donors, care partners, and family members better manage their everyday challenges and improve overall quality of life. Eleven finalists were selected to compete at the Challenge and pitch their companies’ solutions to a panel of independent judges from a range of industries, including experts in the areas of business, technology, healthcare, and patient advocacy. Finalists’ solutions ranged from biotechnology platforms, medical devices to products for consumers and healthcare professionals and were chosen based on their potential to address the unmet needs of the transplant community and how their relationship to transplantation inspired the launch of their ventures.
“One of our core values at CSL Behring is turning innovative thinking into solutions,” said Kevin Kovaleski, Vice President, Global Commercial Development, Transplant, CSL Behring. “That’s the very essence of this challenge and why we are excited about seeing how all of these incredible ideas may someday make a difference for patients.” To continue their commitment to patient entrepreneurship and to raising awareness about organ transplantation, Lyfebulb and CSL Behring will be hosting a Fireside Chat with Dr. Minnie Sarwal and two members of the jury on Tuesday, May 25 at 4:00pm. This virtual discussion is open to all members of the community, and more information may be found on Lyfebulb.com.
Lyfebulb is an innovation accelerator that bridges the gap between patient communities and the healthcare industry by working directly with patients and care partners to generate insights and build new solutions to reduce the burden of living with chronic disease. Lyfebulb operates across 11 disease states and counting. See Lyfebulb.com, TransplantLyfe.com, Facebook, Twitter, Instagram, LinkedIn, and Karin Hehenberger LinkedIn.
About CSL Behring
CSL Behring is a global biotherapeutics leader driven by its promise to save lives. Focused on serving patients’ needs by using the latest technologies, we develop and deliver innovative therapies that are used to treat coagulation disorders, primary immune deficiencies, hereditary angioedema, respiratory disease, and neurological disorders. The company’s products are also used in cardiac surgery, burn treatment and to prevent hemolytic disease of the newborn.
CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. The parent company, CSL Limited (ASX:CSL;USOTC:CSLLY), headquartered in Melbourne, Australia, employs more than 27,000 people, and delivers its life-saving therapies to people in more than 100 countries. For inspiring stories about the promise of biotechnology, visit Vita CSLBehring.com/vita and follow us on Twitter.com/CSLBehring.
For more information:
Karin Hehenberger, MD, PhD
CEO & Founder, Lyfebulb
Phone: + 1 917-575-0210
CSL Behring Contact:
External Communications Manager, CSL Behring
Phone: +1 610-306-9355
I am a two time Heart Transplant recipient, two time synovial sarcoma cancer survivor and stroke survivor.
I developed dilated cardiomyopathy at the age of 9, was on the transplant list for only 9 hours and received my first heart transplant in 1990. I suffered severe rejection in 1995, my transplant team preformed plasmapheresis and that was able to reverse my rejection. I soon after developed gastroparesis from that rejection episode, which I continue to deal with on a daily basis.
In 2011, I received my second heart transplant 20+ years after my first. I had some complications coming out of surgery, aspirated, suffered a stroke and was put on ECMO. I spent 6 weeks in the hospital, along with some outpatient PT/OT but was able to make a full recovery and was back at work 4 months later.
In 2020, I developed synovial sarcoma lung cancer and underwent a lobectomy to remove the tumor & cancer. In May 2021 I had a reoccurrence of synovial sarcoma, this time on the scalp, and had the tumor remove and again am cancer free.
Professionally, I am a supply chain executive Fortune 500 company and I volunteer with various organizations dealing with chronic illness. Personally, I’m married to my beautiful wife and we have two sons. In my spare time I enjoy anything sports related, especially playing golf, and spending time with my family.