In your body, you have two immune systems. One of these, the innate immune system, is hard-wired to recognize and protect you from pathogens and danger signals. Once a danger signal is detected, it sends out powerful pro-inflammatory signals alerting your other immune system to act. Imagine this surveillance program going haywire, activating in the absence of danger, activating constantly. This is what happens in autoinflammatory diseases. This causes disease flares at unpredictable rates, with high fever, urticaria, joint, and muscle pain. You are constantly fatigued which affects you and your loved ones. It affects people of all ages, from infants to middle age, and is chronic. As they are often rare diseases, they are frequently under or misdiagnosed, often taking over a decade to find a diagnosis and a viable treatment.
I have been diagnosed with an autoinflammatory disease, Schnitzler Syndrome. This is a super rare disease where patients are counted in the hundreds – worldwide! My journey as a patient has been long with heaps of diagnostic tests and discussions with doctors. The journey from the first symptoms to diagnosis took 5 years, but I was lucky to access brilliant doctors and treatments that ultimately could nail down my diagnosis. The journey was challenging, though; the chronic inflammation and periodic flares took a massive toll on me physically and psychologically. I am immensely grateful to my wife, children, family, and friends to support through those difficult years.
I am in a good place now, I have stable disease, only rarely do I experience bad flares, and I can live an active and healthy life! I have come to a point on my patient journey where I want to use my disease for something positive! I want to help other patients get diagnosed no matter where they live. I want to raise awareness of autoinflammatory disorders and maybe inspire patients to live the lives they want to live, not what the disease imposes. I recognize that I am lucky to live in a country with a network of experts, where I can get virtually any sophisticated diagnostic test possible, treatments, and psychological help. What if I was less lucky? What if I lived in a less privileged country, without expertise or access to medicines? Would I be able to work? Would I be able to live a full and healthy life as a husband or a father? Would they ever have found out that I am a Schnitzler patient? Probably not, and that is a sad fact!
So, how can I help here? I recently met Saskya Angevare, a fantastic patient advocate, who is president of KAISZ (https://bit.ly/35KqG1i) Netherlands Association for autoinflammatory diseases), vice-president of ENCA (https://bit.ly/3iImxi2) European Network for children with arthritis), and board member of the autoinflammatory alliance (https://bit.ly/2RzKn3y). She told me about a program directed by ENCA that brings patients from less privileged countries to expertise centers in Europe for diagnosis and treatment. This is not possible in their home countries. This initiative dramatically accelerates time to diagnose these patients and offers a path forward that otherwise would not have. It also helps local doctors in the home nations understand autoinflammatory diseases better and drives education and awareness. So how can I help KAISZ and ENCA get more people diagnosed and treated? How can I do this in a way that may also inspire patients to go beyond their limits?
Cycling provides a physical and psychological outlet for me. The bike is one place where my heavy thoughts disappear, and my mind is wandering away from pain and frustration, and my painful legs fly. I choose myself when I want to feel pain. I feel in control. So my thought has been to use my bike to show patients with autoinflammatory disease that it is possible to live actively. This is the vehicle that I can help others, but how?
A little while I had an idea, how about I do an Everesting (https://everesting.cc/) on my bike? What is this about? Let me explain, the rules are simple; find a hill, ride it up (and down) until you reach the height of Everest (8848 m) in one shot, no sleep. It’s a horribly hard challenge, some say the worst they have done on a bike, but I think a small one compared to what patients go through in their lives.
Sponsor me going up the vertical meters, get me to 8848 meters, and so 8848 francs! I promise I will ride every meter above 8848 as well should your generosity take us there! ALL your donations will go to KAISZ and ENCA, earmarked for their “access programs” benefitting patients directly.
Join me on this adventure and help me raise awareness and money to help patients with autoinflammatory disease. Help me show that disease should not stand in the way of life and that no challenge is too big!
Together we can make a difference and trust me when I say that getting a diagnosis and treatment changed my life!
#raredisease #lifewithschnitzlers #patientnotprisoner #august4autoinflammatory #autoinflammatoryawareness #hope4SAID #morethanafever #notjustafever #outsideisfree
I want to mention also that I am a scientist employed at Novartis, and this fundraiser is done entirely in a private capacity and has nothing to do with my professional life. I am a patient and a person first and foremost.
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