Dianna was so eager to share her story when she read about Jaime that she wrote to me asking me how she could do so too! She shares a few treatment tips in this post, but as usual, I recommend asking your doctor before you try anything new. Thanks for getting in touch, beautiful Dianna! We have shared lots of common experiences, including discovering NYC restaurants!
"As I sit here trying to put into words exactly what life has been like for me it’s difficult to fully express it all in a few words I guess I can start from the beginning. My name is Dianna Jimenez I am 31 years old, I live in New York City and my family is from the Dominican Republic. I was born 3 months premature and was diagnosed with Netherton's Syndrome early in my infancy in 1982. Netherton's Syndrome is a rare genetic skin disorder that forms part of the Icthyosis skin disorder family Netherton's syndrome affects every aspect of a person's skin, hair and auto immune development.
When I was born not much was known about the disorder. I spent my first month of life in an incubator and it was not certain if I would survive. Netherton's syndrome can be very painful because the skin sheds extremely fast without giving the new skin time to fully develop this can cause a lot of infections and fevers. Growing up and today I have to be careful in the winter to cover up and in the summer not be in the sun too much.
As a child I was hospitalized more times than I can count and seen more doctors than I possibly remember My toughest years were middle school because I did not understand what was going on with my body, I still did not know how to take care of myself and became very depressed. I became a victim of bullying and had very difficult time coping.
One thing that has helped me was a deep need to persevere no matter how difficult life seemed. I have a strong belief in God. I had this deep urge to move forward that has kept me alive and thriving. Having this disorder has helped me see the beauty in the most unlikely places, it has helped me gain sincere and amazing friends and has taught me to admire my family for helping me learn self acceptance and experience unconditional love. I graduated from college in 2004 with a BA in Psychology and 2008 received a Masters in Counseling. For fun I like to travel, read, and discover new restaurants in NYC.
Today life is not completely a walk in the park but it has gotten much better. Lately I have been using a new lotion called Renew, it has been helpful but I change what I use often. I bathe twice a day to help with skin buildup, I try to use mild soaps and at times use clorox bleach in the water. One part that has been difficult to get under control is allergies and itch. I use the medications Atrax and Doxipin both of which cause drowsiness but they are helpful. I started experimenting with makeup and learning what works for me and what does not.
This is just a little bit of my story, I think I can write a book, but I hope this small amount can help someone else persevere through their personal difficult time, if I can do it so can you! :)"
For Ichthyosis and appearance diversity resources, click here.