Kristi Scmitt Burr founded an organization to help others with Basal cell nevus syndrome (BCNS), an inherited disorder.

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My name is Christy Schmidt Burr. I live in Ohio. I have basal cell carcinoma nevus syndrome, also known as Gorlin’s syndrome. I had the condition and I had a son that was also born with the condition because it is autosomal dominant. he inherited that from me. I had a daughter who was I was born prematurely and only lived two days, I decided that something needed to be done so other people would not have to go through the same learning curve, and that maybe we could make a difference in outcome for people who also had the same condition.

we incorporated in the year 2000, an organization called the Basal Cell Carcinoma Nevus Syndrome Life Support Network. we’re an advocacy patient awareness organization that attempts and delivers to inform people about the condition, also help alleviate Some of the side effects by helping them find people who really understand the condition and can help treat them with multiple options, Someone may have an oral cyst that needs to be removed. Another person may have basal cells that need to be treated. Yet another person may be overcoming side effects of a particular product that they want to understand how to cope with some of the side effects. We also participate in medical meetings and meet with researchers.

We meet with physicians, we meet with pediatricians, genetics, people involved in genetics, nurses, physicians, assistants, to raise the awareness. Because it is a rare condition, considered an orphan condition occurs at about the rate of one in 54, 000 people. for every person we have found that comes to the organization, we generally find one or two more people in their family who were never properly diagnosed.

I went to college for elementary education and find this the best use of my time, talents and skills to help others It’s not just about a basal cell. It’s about how people live and can cope at home, how they can overcome some of the learning disabilities that are sometimes associated with it.

But also helping them maintain their highest possible quality of life while navigating different manifestations. bed at night for the first time in my life, I feel like I have contributed to the best of my ability to help others similarly affected and by bringing factions together.

We look at it as a loving umbrella networking with many organizations and people. We don’t have to provide all the answers. some organizations do a better job.

And that is one of the realizations that I’ve been pleased with is that we don’t try To be everything to everybody. We try to find the right answer. Similar to the Santa at Macy’s who in Miracle on 34th Street, finding the answer even when he didn’t have it himself. maybe that’s just fulfilling their dream.

dream.

Maybe they want to be able to go to college. we’ve been able to help some people accomplish that by finding other organizations who might scholarship them. Perhaps it is finding them a doctor who’s more familiar with their particular manifestation.

Maybe it’s a brain tumor. we don’t want them radiated for that brain tumor. the outcome may be multiple basal cells. So we’ve actually been interventional as we have worked with some of the stakeholders in this and brought them to the table to bring the caregiver, the patient, the doctor, the nurse, the practitioner together and come to consensus on how they’re going to treat this condition comprehensively.

I don’t think I’ve ever experienced anything as fulfilling personally and objectively as a team member. Because it’s not just about me, it’s about all the people that volunteer for this organization, the parents who come to us the geneticist who’s integral in helping doing genetic counseling and also being a quarterback for some of the tests and evaluations that the families need.

But ultimately, when that little child comes up at one of our regional meetings and sits on my lap and shows me they still have teeth because we were able to be sure they operated early without having those cysts get too large so they needed extensive invasive surgery, it warms my heart.

We’re also happy we’re able to help them maintain life and quality of life to the highest degree possible