I have just returned from The Cura Foundation’s Unite to Cure 2018 Conference and want to tell you that it was an exceptional experience which filled me with hope for the future of autoimmunity.
The global conference, hosted in Vatican City during the last week in April, united the world’s foremost scientists, physicians, researchers, religious leaders, philanthropists, and giants in the healthcare industry to consider how science, technology and 21st century medicine will impact society. The agenda included panels concerning the future treatments and possible cures of rare, untreatable and presently-incurable diseases. Unlike other medical conferences, patients and their families are also given the opportunity to add their own voices to the discussion so that the medical community can understand how these diseases impact the lives of so many who are affected by them.
My family and I were fortunate enough to attend as the winners of The Cura Foundation’s Stories of Hope Contest, a social media campaign which called for individuals and families to share their stories of hope in the face of adversity and illness. Those of you who have read my memoir, Drying My Tears, already know that I suffer from Sjogren’s disease, rheumatoid arthritis, lupus, small fiber peripheral neuropathy and antiphospholipid antibody syndrome. My three daughters also suffer from varying autoimmune and rheumatic conditions such as spondyloarthritis, lupus, Hashimoto’s, Guillain-Barre, pernicious anemia, alopecia areata and undifferentiated connective tissue disease – all of which began in their pre-teens through early twenties. I also have two brothers who live with autoimmune conditions. Yes, it makes for a great story, but not one you would ever wish on someone else.
Please know that I am not reporting as a physician, expert, or researcher so I encourage everyone to visit the Unite to Cure website where you are able to view all of the talks and discussions about many groundbreaking treatments, especially those on Day Two regarding using adult stem cell therapy to treat autoimmune and other diseases. Note that I am not referring to embryonic stem cells which raised many ethical objections – especially by the Catholic Church – in the early stages of stem cell research (the conference was hosted and co-sponsored by the Vatican itself.) I am referring, instead, to stem cells which have been harvested from a patient’s own body or from banked umbilical cord blood or placental tissue.
A HUGE word of caution here: I am speaking of therapy delivered by top-notch physicians at major research hospitals, not others who may make great claims but are less-proficient. Stem cell therapy has not yet been approved by the FDA for all autoimmune diseases so there are those who travel abroad in their quest to receive this therapy. Some of the approaches to treatment resemble those of a bone marrow transplant; diminishing a patient’s immune system with chemotherapy or radiation before giving the stem cells. This treatment can be extremely dangerous and needs to be delivered by someone highly trained and knowledgeable. Other facilities are doing research studies using different sort of stem cells which do not require the body’s immune system to be depleted and so are not as risky. Again, I encourage you to visit the Unite to Cure website to find out more.
What must have been a logistical nightmare in its planning, seemed to run seamlessly for its 400 attendees. Every measure of thoughtfulness and care was afforded to my family and me – including providing a private room in a Vatican hotel for me to rest during the day. Members of The Cura Foundation did not even know I had published a memoir when my entry was chosen as the winner, but it appeared as if they anticipated my every need none-the-less. I wish I had possessed the strength and endurance to attend every discussion at the conference, but my overwhelming fatigue simply prevented me from doing so and so I intend to view every discussion I missed from the website. My husband and daughters were a different story; soaking up every bit of information they could.
My family’s panel was 15 minutes in length and moderated by Meredith Vieira. Additional conference moderators were Dr. Sanjay Gupta, Dr. Mehmet Oz and Dr. Max Gomez. My husband and I were also interviewed by Dr. Gomez. When I look back at both opportunities, I realize that there are many answers I would have phrased differently or more information I would have liked to impart. I wanted to talk about fatigue and neuropathy, but the time seemed so limited and the questions posed were mostly centered on my family.
We were also given the huge honor of being named Pontifical Heroes for our strength in the face of adversity and providing hope for others. His Holiness, Pope Francis, addressed the conference on the final day and I had the opportunity to sit in the second row – a dream come true for me!
Because we were given the opportunity to tell our story, countless attendees approached our family with encouragement, compliments, and even offers to help. We received an offer to do genetic testing on the entire family and I plan to seriously consider an offer regarding taking part in a stem cell trial. This particular trial is using mescenchymal stem cells; the treatment which I described in my layman’s terms as the less-risky form.
Besides the honor of being able to attend this event, my personal takeaway from this conference is one of true hope. I personally spoke with a woman who has been disease-free after taking part in a clinical trial in 2005 for MS patients. Her cure may seem like a miracle, but it is the emerging science of regenerative medicine instead.
For years we have been told that there is no cure for the various diseases my family suffers from – no cure for autoimmunity itself. Yet now I find myself imaging a day in the future when my daughters will not suffer from joint pain every day of their lives; when I wouldn’t need a special Ugg blanket at night for neuropathic feet; when I could open my eye drops without pain in my knuckles; when I wouldn’t even need eye drops because I would no longer have dry eyes! Imagine not worrying about kidney disease, lymphoma, and lung function. Invision not needing eleven medications and infusions. Picture a day when the Walking Dead Wipeout fatigue would no longer descend as you trudge through a grocery store. Say a fond farewell to the ten specialists I need to see throughout the year. Hello primary care physician! Alone.
So here is the link to my family’s panel discussion and interview on youtube:
What a wonderful journey it has been! A huge thank you to the Cura Foundation and #unitetocure
as well as the Dr. Oz show!