Ellen C. - Raleigh, NC - 2019
An Interview with Ellen Clemmer
I believe you were the President of FIRST at one point, right? When was that?
I was Chairman of the Board/President of FIRST, from 1984-1992, before we were even named FIRST. We were known as the National Ichthyosis Foundation. We relocated the office to Raleigh, NC, after I was elected. The organization began in California, and I ran the office as a volunteer for years. We had no paid staff for a long time. My responsibilities included fundraising, supervising the executive director (once we had enough money to hire one), helping the volunteer support staff and the 11-member board of directors who were located all over the country. We developed a regional support network of volunteers who helped build membership in their areas. We conducted board meetings mostly by conference calls. I spoke at national conferences, lobbied in Washington, DC, and presented lectures for about 500 dermatologists at their national conferences. We maintained a mailing list of about 2,500 people. I handled financial planning, budgeting, public relations, and outreach counseling for patients and families. I wrote and published the newsletter and other educational material. Also acted as liaison with physicians on the Medical Advisory Board. We had a very active group of volunteers and board members who helped keep FIRST growing when we had very little money. My mother, who had a lot of volunteer experience with other charities, served as treasurer for a while. Lots of people helped us survive! And we did it all before computers and the internet. Just plain old typewriters, rotary telephones, and letters mailed with stamps.
What do you appreciate the most about FIRST?
I think I appreciate how FIRST successfully brought people together who once felt so isolated, people who had never met anyone else with ichthyosis. We are a family! Advocating for us professionally has helped treatments become more available, and research has helped improve our quality of life. But most important are the connections that have lasted for years.
What positive changes have you seen in the organization over the years? How about in our ichthyosis community?
People are more willing to talk about ichthyosis. The stigma is not so much an issue. It’s who we are, and we are no alone. We have each other, and people all over the world are connecting.
I remember that you and some (or all) of your siblings have ichthyosis, what was that like growing up? How did your parents raise you to be the successful people you are today?
I have three younger brothers. Two have ichthyosis and one does not. We have ARCI-CIE/lamellar. I was fortunate to be born at Duke University Hospital in Durham where my grandfather was a Duke physician and was friends with the head of dermatology. I was almost two months premature, a collodion baby and was diagnosed and treated immediately. My father was a psychiatrist, and my parents were very encouraging and never let us use Ichthyosis as an excuse for not doing our best. They would say, “It’s only skin. You have two arms, two legs, two eyes and two ears. You have everything you need to be successful and do anything you want to do.” My brothers played sports. I took ballet and danced my little heart out. Our parents poured water over my brothers while they ran track, and lathered us up with lotion every day. We were happy. We were thankful to have each other, and we never felt sorry for ourselves. My dad would say that our skin was only the envelope. It’s the letter inside that is important. My brother Bill is a Family Nurse Practitioner. My brother Wiley (the one without Ichthyosis) is a biochemist in the rubber industry. My brother Thomas has his own business as a home designer. They are all very successful and we are all very close. We live within a few miles of each other and see each other often. We each have children, none of whom have Ichthyosis. My grandsons do not have ichthyosis either. Ours is the recessive type.
Did you attend college? What degree(s) do you have?
I attended UNC – Chapel Hill as an undergraduate and received a Bachelor’s in Journalism. I became a newspaper reporter and then a public relations director. Later I returned to UNC – CH and obtained a Master’s in Social Work, became a licensed clinical social worker and began a new career in the mental health field.
What word of advice would you give to a young person living with ichthyosis? What are your secrets to becoming confident and successful?
Live your life! Do what you love! Be kind to others and always say thank you. Help those in need and be the best person you can be. Don’t be afraid to try something new and don’t let your skin define you.
How did you meet your husband? Did you have any fears about falling in love and marrying due to your skin disorder?
I had no fears about falling in love. It just happened. We met in college. I’ve been married twice. First when I was 21, and we had two darling children. We were married for 21 years, but things became stressful as they sometimes do. We divorced and are still friends. Friends introduced me to my second husband. We have been married 16 wonderful years, and we are both retired and spend lots of our time taking care of two adorable grandchildren. Both boys, ages 3 and 4. I have never been happier than I am right now.
What are you doing nowadays?
Mostly babysitting the grandkids! I take art classes and love to paint. I spend time with family, friends and my husband. Tom and I have travelled a lot, but have slowed down since the boys came along. I never was questioned on an airplane, but strangers have stared and sometimes asked questions. Our parents always told us to just smile back and if asked, say “I was born with dry skin. My name is Ellen. What’s your name?”
Tell us a little bit about yourself. What makes you, YOU?
If you ask me what my hobby is, I would say PEOPLE. I enjoy talking with people and getting to know them. Strangers come up to me all the time and just start talking. My husband is amazed when this happens. I like to get to know people. I enjoyed being a mental health therapist for 25 years, because I like to help people.
Is there anything else you’d like to share with us?
I’m so proud of what FIRST has become. We struggled in those early years, but somehow we kept things going. So many people have participated in building this organization into what it is today. I’m excited to see what the future brings!
What's Your Story? We'd Love to Hear It!
This information is provided as a service to patients and parents of patients who have ichthyosis. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.