I ran from my lethal diagnosis for years. Let's make this rare disease a household word.
I take pride in being a good anesthetist, but that didn't do much to keep my family from being destroyed by a rare genetic disease called Vascular Ehlers Danlos Syndrome (VEDS). So far I have lost my father, all three of my brothers and a nephew to this disease. If nothing changes, there will likely be more.
My father suddenly died of a ruptured hepatic artery in 1989 at the age of 48. Neither of us knew why it happened or that it was just the beginning.
In 2004, my brother Steve was diagnosed with an aneurysm in his iliac artery due to VEDS. For the first time, he gave a name to a disease we now wish we had never heard of. He underwent elective open repair in 2006 at the age of 40 and died after surgery for multiple bleeding complications. Four years later my brother Tom died of a perforated heart ventricle at the age of 42 after undergoing minor heart surgery.
My brother Mike knew he had it for a while. We were friends, like all of my brothers, and we often talked about hope and life to the fullest. To be honest, I was scared every time I saw his cell phone number pop up. In 2013 I got the phone call I feared when he died of coronary artery rupture at 49. Later that year, Mike's apparently healthy son Chris, 25, died suddenly from a ruptured kidney artery.
VEDS is far from cruelly finished with our family. VEDS patients are prone to rupture arteries anywhere in the body, including the aorta, rupture of hollow organs such as the bowel and uterus, and collapsed lungs. Although it is very rare, it affects 50% of offspring and the median lifespan of patients is around 48 years. We have already had at least two additional diagnoses and our family is far from being alone. An estimated 6,000 to 8,000 Americans have this disease.
I ran away from diagnosis for years. I didn't want to give up hope that I could avoid the fear my brothers experienced when I lived with the knowledge that these were essentially time bombs. Even so, they somehow managed to live their daily lives fearlessly. If you've met them, you may never have known they had a terminal illness.
Tony and Mike Yasick in Downingtown, Pennsylvania in January 2012.
Lately, COVID-19 has shown us all what it's like to live with fear, which the VEDS community knows all too well. It is difficult to face your own mortality every day. If you're not careful, it can make you tough and adamant, but it can also free you from minor concerns so that you can better be the person you want to be.
It also means that you may face impossible choices. In our family, none of us knew about VEDS until we were married and had children, but I cannot imagine having to choose never to have the blessings of my children and to pass this cruel disease on to them. My niece Emma recently married the special kind of person it takes to face these fears and insecurities together.
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I've learned that fearless doesn't necessarily mean "not afraid". It can only mean being a little better at being intentional, present, positive, and most importantly, loving, so there isn't much room for fear. I think I would be happy if people said they didn't know something was wrong if something happened to me.
Hope for a cure
In all honesty, I didn't freely share my diagnosis because I don't want VEDS to be my identity. I'd rather people see me as a family man, good friend, and doctor first. But what is frustrating is that there is currently no really effective treatment and therefore little hope for anyone living and dying with VEDS. I hope that sharing my story can now trigger a call to action.
There is a small group of excellent clinicians and researchers in the field, but hope for a cure is really on the ground floor. In the meantime, we urgently need energy, expertise and resources for the basics: research, registries, drug development, and especially drug studies.
Tony Yasick at Holland Hospital in Holland, Michigan in November 2019.
These challenges are enormous and of course depend heavily on funding. The obvious reality is that these initiatives are very expensive to properly deploy, especially for such a small patient community.
Fortunately, other rare diseases like cystic fibrosis have caught the public eye. While few have heard of VEDS, we need to make it a household word too. We are already working to educate patients and their families, and we need to keep getting doctors involved. Early awareness of the emerging effects of VEDS is just as important as better monitoring and lifestyle recommendations.
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The next important step is promoting greater public awareness and encouraging public and private support. I hope that when you hear about VEDS today you will push the effort.
What really drives us is hope. Clinicians, researchers, and lawyers are actually starting to pool the resources they have, which gives us hope. And hope, measured against another year of life, is a reason to fight. Of course we can't do it alone. We have made a start, but we have a long way to go. We need people who fearlessly walk this path with us.
Dr. Anthony Yasick is married and has three children. He is partner and clinical chairman of Macatawa Anesthesia PC, Holland Hospital in Holland, Michigan; Chairman of the DEFY Foundation; and serves on the board of directors of the Marfan Foundation, a related condition that recently established a VEDS research and patient support department.
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This article originally appeared in the US TODAY: VEDS Diagnoses: Living Fearlessly Despite Rare Genetic Diseases
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