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Feb. 25, 2020

TOPIC: Advocacy, Patient Stories, Patients & Members, Rare Disease Day

Why Rare Disease Day Is Important to Me, by Chris Madden

Posted by Laura Mullen

Does anyone ever think that they may have a rare disease? Well, I for one definitely didn’t. Here I was, having my annual check-up with my very astute dermatologist, who noticed an unusual clustering of red spots on the palms of my hands. She immediately sent me to a local New York hematologist who, after several blood tests, diagnosed me with what I then learned is a rare disorder. But since very little was known those many years ago about my genetic disease, hereditary hemorrhagic telangiectasia, there was little guidance about how to pronounce it, let alone deal with it.

Since then, I’ve learned to carry around a ‘HHT’ informational postcard in my wallet to share with my medical practitioners, and also to compress into about four sentences the “who, what, when and why” of this rare and complex vascular disorder that affects blood vessels throughout my body and is found in approximately 1 in 5,000 people in the US. HHT is just one of the 7,000-plus rare diseases that are currently identified by the National Institutes of Health (NIH).

Let me back-up a little bit to explain how I became a patient advocate for NORD and all rare disorders. You may be old enough to remember me from the first televised series on HGTV,  “Interiors By Design With Chris Madden.” Or you may recall seeing me in the late 90’s on “The Oprah Winfrey Show” as her first design correspondent, showing Oprah’s viewing audience of 18 million how to turn your home into haven™. You might have even bought some of my furniture, candles, towels, bed linens, dishes, glasses, mirrors or fabrics at JCPenney, or picked up one of my decorating books at a bookstore. Perhaps our paths may have even crossed during my nearly one thousand design seminars and speeches.

I had a whirlwind and, at times, dizzying career for over three decades, traveling the globe for my clients, including Oprah, Toni Morrison, Katie Couric and Gayle King, among others. I had an incredible team of young, enthusiastic, creative women and men who not only had their hands in just about everything I was doing, but also supported me through my hospitalizations and recoveries. 

All rare diseases are unique in some regard and mine is no different. I have multiple abnormal connections in my blood vessels, which allow numerous arterial malformations to develop between my arteries and veins since I lack capillaries, those efficient little cleaners that are usually found connecting arteries and veins in most blood vessels. These abnormal blood vessel formations can often be found in the skin, mucous membranes, and often in organs such as the lungs, liver, brain, and the spine (in fact, I suffered from a spinal epidural abscess two years ago).  

After my first brain abscess (after an annual dental cleaning, done without being told about the need for pre-medication), I was lucky enough to be in Boston where an incredible team at Massachusetts General Hospital not only excised the infection from inside my skull but also referred me to Doctor Robert White at Yale/New Haven Hospital. It was there that Dr. White, who helped create lung embolizations, performed the first of my approximately 25 thin platinum wire lung coiling procedures that I’ve had over the years to help close up the openings that have wreaked havoc on various parts of my body. I’m also grateful to my incredible team at Johns Hopkins Hospital has cared for me over the past twelve years, and I am fortunate to currently be on a clinical trial with them. I’m hopeful that my own experience will help future generations successfully battle hereditary hemorrhagic telangiectasias.

It wasn’t until my third craniotomy (the medical term for brain surgery, as I now know all too well), when I was helicoptered onto the roof of the life-saving Johns Hopkins Hospital in Baltimore from a medical center in NYC that sadly did not know how to treat my HHT, that I realized it was time I stepped up to the plate and used what visibility I had in the world of design to join the fight against rare diseases.

About a dozen years ago, with the blessing of my husband and two sons, I became a health care advocate, and along with others, met with members of the House and Senate to relay our personal stories of dealing with our medical challenges, informing them of the need for more appropriations for all these myriad diseases, and of course thanking so many of them for standing up and working on the health care issues impacting so many of us. 

So not only have I spent much of my time educating myself and others about the intricacies of my rare disorder, I’ve learned to walk my talk. In addition to my trips to Capitol Hill to help educate and fight for funding and awareness for ALL rare diseases, I was arrested with hundreds of other health care protestors, physicians and advocates on September 25, 2017, when the Senate began hearings on the possibility of repealing the Affordable Care Act. I’ve also had the privilege of speaking to New York City marathoners running on behalf of NORD in November 2018, sharing my own attempts at running races along with my colleagues at Sports Illustrated many years ago. I was so proud that year because my son, Patrick, ran on behalf of my particular rare disorder.

And so, as I recall what a young nurse once told me after my first brain surgery, “You must learn everything about your rare disorder or you won’t make it,” and when Oprah advised me to “Leave your footprint on this planet,” I realize I’ve tried to do both, and am extremely grateful that my own rare disease has led me to such a fulfilling new journey in my life.  

On Rare Disease Day this February 29th, I’ll be wearing my stripes to show the world that just like the individual stripes on zebras, we are over twenty-five million Americans strong, and we are all uniquely rare with the medical challenges that we carry inside every day! I HOPE YOU’LL JOIN ME!