Ichthyosis Awareness Month: Diana's story ~ "I tell my daughter what being a great friend to someone really means."

Today Diana Gilbert shares her story for Ichthyosis Awareness Month. Like me, she was initially diagnosed with Ichthyosis form Erythroderma and later diagnosed with Netherton's Syndrome. Diana had a hard time growing up, but now leads a very full life - working at a bank and heavily involved in the church community - and she has a beautiful family.

"Hi, My name is Diana Gilbert, I was born in March 1975 and now 38 years old. I live in Bermuda, married to James for 15 years and together we have 2 children, D’Jae (girl) who is 10 and David (boy) who is 3. I have one sibling, a brother, who is 20 years old. I work at a bank and have worked there for 18 years. The type of Ichthyosis I have is Nethertons Syndrome (NS). In October 1975, I was diagnosed at Great Ormond Street Children’s Hospital in London, England with Ichthyosis. The type I had (so I thought) was Congenital Ichthyosiform Erythroderma (CIE). Then in 2002 at FIRST Conference held in Seattle I was rediagnosed with Nethertons Syndrome (NS). It was in Seattle we learned that NS would not be passed to my children. We were so blessed and excited!! Hence, the conference was around the end of June, I found out I was pregnant August 19 and had D’Jae in April 2003. We did not waste any time….

I did not start school until I was 5 years old. It was SO difficult as I was teased everyday and often was the last to be picked for sports teams. I remember running home almost daily and crying and wishing one day the CIE was just go and never come back. Yet my grades were ok. One day while In high school I was trying my best to play softball. Being the last one picked I waiting my turn to bat. My teacher helped me by telling me how to hold the bat. On this day my teammates told me to think of the head of a boy who did not like me coming towards me on the softball. Well, I tried it and I struck the ball way over the field!! It was a great moment..

Often in school I would find myself thinking of my future and wondered if I would ever get a boyfriend, get married and one day have children. I would always ask my mom and she would say “One day Diana, it will happen, just have faith” . Well she was right. On July 12, 1997 I married my high school sweetheart, James. Our wedding was beautiful, I wore a white wedding dress, the sun was out and I had my nails and hair done. On our wedding night, I thought our marriage was over, as my skin had a serious flair up. It was very hot, raw, sore and very painful. I think my nails were too long, and I could not get my creams on. The dress actually had to be peeled off. James (below) helped me through and we have been together ever since. I look forward to the day when we can have a proper wedding night and honeymoon.

My daily routine is to shower once a day with Dove unscented soap and I use Emulsifying Ointment on my face, naval area and pubic area. I also use St. Ives Vitamin E Hydrating Lotion on the rest of my body and Cornstarch under my breasts to prevent chafing and it cuts down redness and sweat/discharge. I use Vaseline during the day on my lips to touch up if they get dry. I am the only one in my family with Ichthyosis. In my head I use Tea tree cream and Vaseline in my scalp and shampoo with Johnsons Baby Shampoo. I use a fine toothed comb to pick the dry skin out. My mom says that when my scalp is cleared out my face looks clear. On my face I use Emulsifying Ointment on my face with a little Vaseline on my lips, around my nose, in my ears and around my eyes. My ears get syringed sometimes with warm water and Savlon. My eyes always water so I always have tissues handy. They also get green/yellow cold on the corners. My nasal passage sometimes gets filled with skin but not too much. I do not sweat. I do not have a diet and just eat what I want. However, I do have restrictions as to what I can eat, at certain foods causes my skin to itch. Foods like fish, chocolates, citrus fruits, tomatoes, dumplings and spicy foods. I also get constipated very bad but have found that drinking coffee and eating Activia yogurt to be help tremendously. Overheating and getting dehydrated occurs sometimes. I can blister real bad and have to be hospitalized. I am always cold and always wear sweaters and coats all year long. Swimming in salt water helps my skin too. I drink flaxseed to cool me down sometimes. I use plain bleach in bath water to reduce body odor.

James and I have attending all the skin conferences except one since 1998 and have enjoyed meeting so many people and I am able to inspire and share what I have used and learned during my trials with dealing with NS. In Kansas City, it was our daughters first time to a conference and she enjoyed it. She met a little girl, I think it was Alexis Rodrigues, and she compared Alex’s skin to her own then invited her to our room to play. My mom, dad and brother joined us in Philadelphia, it was fun having them all there to support me. The last conference I had a great experience in meeting Melissa Martin, who has NS too! Most times I go I meet little children or seniors. It was great meeting someone around my age with similar experiences. In 2010, we had both our children there. David - pictured below - had a blast playing with all the children in the children’s room. None of my children have NS and we learned that they will not pass it on to their children.

Now I try to help the rest of my Ichthyosis family the best I can. Thanks Facebook!! I find that knowledge is the key and you have to tell your story, as you never know who will read it and get motivated to tell their own. Everyone has one!! I have been to a few schools to talk about my skin, even went to the one I attended, it was weird but I stayed focused. Often I find myself explaining to D’Jae what school life was like for me and I try to stay calm and tell her the truth about what teasing and being a great friend to someone really means. My past was rough but I persevered and am so happy to be where I am today and would never want to go back. Full speed ahead!! I love my family and all that I have accomplished and hope to do many more things. My family attends church Sundays, which I am actively involved in Church Girls Brigade, help in nursery, scripture reading and joined the Guild recently. I love volunteering all over the place!! My coworkers always wonder how I do it, but I just follow my heart and get involved and stay busy, even though it already is with a busy family!! If you would like to communicate with me, contact me at diana.gilbert@butterfieldgroup.com - I would love to hear from you!! Hugs from Bermuda!!"

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.