MEDIA

On this page you can find items such as press releases, newspaper articles, interviews, etc. regarding the

 BCCNS Life Support Network, and it's work.

Bud Caruso–All of our life we're told how rare this disorder is, that you know, there's more out there, there's a few out there somewhere but you're not likely to meet anybody.

Renita Jablonski–Bud Caruso is a real estate agent from Illinois and a 30-year patient of Basal Cell Carcinoma Nevus Syndrome.

BC–My whole life, I know I was longing to meet with someone who had the symptom, somebody who had walked in my shoes and that I can share some things with.

RJ–This weekend Caruso met many people that have walked in his shoes. In fact, he's been reaching out to other BCCNS patients for the last couple years, using the internet to distribute information and services for others with the disease. And it was in this way that Caruso developed a relationship with Kristi Schmitt Burr here in Cleveland -- she too was looking for others to understand.

Kristi Schmitt Burr–People who have just basal cells and there's nothing "just," I guess I need to really define that, there is no such thing as "just a basal cell." You can die with having untreated, undiagnosed basal cells but this is a genetic disorder, this is not just from exterior effects, such as the sun, which is also a catalyst of this disease but you are born with it genetically.

RJ–Today Schmitt Burr is the President of the Basal Cell Carcinoma Syndrome Life Support Network. Based in Burton, Ohio, about an hour east of Cleveland, it's the first of its kind in the country. Schmitt Burr says the group works towards providing a network of healthcare, counseling, and support services to children and adults that suffer from BCCNS.

KSB–People who have this condition have many manifestations, over a hundred manifestations of it as they go through their life. Some children are born with hydrocephalus, some are born with cleft palate. You can have extensive jaw cysts, bone tumors, you can have meningiomas of the brain, later in life you have multiple skin cancers, very invasive basal cell nevus syndrome cancers that are very invasive and with that comes a lot of scaring, maming.

RJ–BCCNS is known by other names including Nevoid Basal Cell Carcinoma Syndrome and Gorlin's Syndrome, named after Dr. Robert Gorlin, one of the first physicians to identify and follow the progression of the disease in the 60's. Dr. Gorlin was a speaker at this weekend's retreat in Aurora, telling the story of his first encounter with the disease.

Robert Gorlin–Muriel comes in the following Saturday and Muriel, I noticed has a head which is too large for Muriel. And Muriel had a prosthetic left eye. The only other thing I noticed immediately was that she was sort of hunched. And I said to Muriel, "You know, on your face you seem to have a lot of lesions that don't look too good to me." And she says, "Well what do you think they are?" And I said, "Well, I think they're basal cell cancers."

RJ–Gorlin says the internal manifestations of the syndrome, such as skeletal or organ malformations, aren't among the things that make life challenging for patients of the disorder but rather, those signs visible in their appearance. Jim Costello and his wife, Margaret, traveled across the Atlantic Ocean to attend the Conference. They are the founders of the Gorlin Support Group in England. Numerous surgeries to remove basal cell cancers have cut away much of Costello's face, leaving him with large patches of scars. He is without a nose and a little more than scabs are left where his ears once were.

Jim Costello–I'm not a medical professional, I'm a sufferer as you can see but at the end of the day, we give them all the information and they, it's their choice at the end of the day what treatments they have, it's their choice what the future holds.

RJ–Costello says since there is no cure for the genetic disorder, education is the biggest tool available to empower patients. Schmitt Burr explains that treatment relies on constant surveillance for and treatment of the findings, most often requiring surgical removal of tumors.

KSB–You in your lifetime will see a neuro surgeon, you will see oral surgeons, profuse oral surgeons as you're growing up.

RJ–Genetic counseling also becomes critical in the ongoing care of a patient with Gorlin's, especially with issues of having children. Both Schmitt Burr and Margaret Costello have lost children to the disease.

KSB–So people are asking should we have children or not, people who are dating say how do I tell my prospective significant other how to present this to them, in mid-age we're looking at some life-care decisions, long-term. Some of us are losing our sight, some of us may have a brain tumor with this and you wonder to what degree you will be able to function at all with this.

RJ–And while all of those answers are clear, the Life Support Group provides a place to go with those questions. In Aurora, Renita Jablonski, 90.3 WCPN.

The Costello Family - Gorlin Syndrome

On Thursday January 31, 2002 the BBC (British Broadcasting Company) aired "The Costello Family - Gorlin Syndrome".

This was one segment in a five part documentary series, titled "Bitter Inheritance", focusing on genetic disorders.  The BCCNS Life Support Network welcomed Jim & Margaret Costello, along with their son Richard, and the BBC crew as honored guests at our annual meeting in April 2001.

Following the broadcast the Costellos were overwhelmed with 100's of emails and phone calls expressing support & encouragement. They were kind enough to want to share some of the emails with us.  Click here to view emails.

Heroes with a Thousand Faces

Contact: Kathy Delong
Cleveland Clinic Press
216.445.5547
delongk@ccf.org

Imagine if we had to wear our imperfections like labels on our faces every day, all the time – in photos, at formal events, interviewing for a job, and meeting someone for the first time. What if there were no hiding our imperfections? No doubt we would struggle with feeling self-conscious and we would constantly wonder how we were being judged by others.

In her book Heroes with a Thousand Faces, writer Laura Greenwald introduces us to people who were born with severe facial deformities or whose faces have been changed forever because of injury or disease. Their stories are at once heartbreaking and hopeful. They teach us all the definitions of patience and perseverance.

One young woman, Melissa, has undergone forty-two surgeries in nineteen years to try to correct issues affecting her face since birth. After surgeries, she refused to look in the mirror for days. “She wouldn’t look in the mirror,” her family says, “because she wouldn’t know who was going to be there.” Today, Melissa advocates for education and understanding for people with facial deformities. “I wish parents would educate their children that we’re not all the same. I wish parents would tell children what’s wrong and not just tell them not to stare.”

From a fascinating behind-the-scenes look at how prosthetic noses, acrylic eyes, and other replacement parts are made, to the headline-grabbing debates about facial transplantation, Laura Greenwald challenges her readers to look beyond physical appearances and to see the heroes within.

A portion of the author’s proceeds benefits programs to support people with facial differences.

Order Heroes with a Thousand Faces from BN.com or Amazon.com, or by contacting Strauss Consultants at 718.625.9382.

ABOUT THE AUTHOR: Laura Greenwald is Manager of Consumer and Physician Communication at Cleveland Clinic. She earned her B.A. in marketing from Notre Dame College, Ohio. She and her husband, Scott, have two grown children and live in Chardon, Ohio.