Eustolia - Age: 73 Edinburg, TX
What type of ichthyosis are you affected with? Lamellar Ichthyosis
What treatments do you use for your ichthyosis? Polysorb hydrate blended with hot salt water and sometimes I add Lac-hydrin Lotion. A strong religious faith and closeness of extended family and friends have been very helpful to my coping with this condition.
How have these treatments changed over your lifetime, and has your ichthyosis itself changed? At birth, the local doctor told the family that I would not live more than three days. Immediately they began experimenting with any suggestions recommended by doctors and healers. Ten years later, the first dermatologist came to South Texas. When I was young, my parents used homeopathic remedies including olive oil, lard, aloe vera and any other options. My parents would boil and try every plant anyone suggested; lantana, sage, mesquite, and citrus leaves were just a few. The bath had to be very warm. After each bath, I applied cream and ointment to contain the moisture in my skin. To this day, I continue the same process. Scales have become larger and harder and my skin has become harder and tightened, my eyes have changed quite a bit. The tightness has caused the lower lids to roll down, placing the tear duct on the outside.
Tell us about the challenges you face, at this decade of your life dealing with ichthyosis. Besides my vision, my sense of touch is almost non existent. The hardness and sleekness of my palms make it difficult to handle papers, often they just slip off my hands along with anything I hold. Holding a pen or pencil is very difficult as well. My eyes tear all the time, often blurring my vision. If my eyes are not tearing, they are very dry, often burning my eyes. During the hot weather, if I overheat, my head begins burning, my scalp dries and cracks, and I feel like my head is so tight and hot it seems like it will explode.
What seems important now that that you are older compared with what seemed important when you are younger? I have always been concerned with the appearance of my skin and hair. These days I wear a wig in public. Ever since I was young, the heat was caused my body to swell to the point that my skin splits and bleeds. Now I know to avoid the heat as much as possible. When I get over heated, my body gets red and bloated. If I am not careful, my skin can stretch so much that it breaks and bleeds.
If you knew "then" what you know "now" what would you do different? I would not change the way I dealt with my problem. I experimented alongside the doctors and healers to find what would or would not work to benefit my condition.
What hopes do you have for the future, taking your condition into consideration? I would like to write an article about my life dealing with ichthyosis so that my family and others can benefit from my experience and gain a better understanding of the condition.
What advice would you have for others affected? I would like for the families of the children born with this condition to encourage and support them to lead as normal a life as possible. I would encourage families to build a strong religious and loving foundation. Along with a good education, they will lead a very long and fulfilling life. I also would like to thank God for my life. He has provided me with the ability to cope with this condition. He gave me a very caring family. My parents, grandparents, siblings, cousins, aunts, uncles and friends were there to guide and protect me.
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