Ichthyosis Awareness Month: Peggy's story about Andrew and Aaron, her adult sons

Peggy has two adult sons affected with Ichthyosis. She is a key member of the online Ichthyosis community, always championing against discrimination and ignorance online. She writes about her sons, Andrew and Aaron, here.

(Peggy's sons Andrew and Aaron as children)

"This is my experience of living with someone affected with Congenital X-Linked Ichthyosis.

Prior to the birth of my sons Aaron and Andrew, the word Ichthyosis wasn't even in my vocabulary. I had never heard of this condition, nor did anyone in my family (both Mom & Dad's side) was ever affected with it, so when my first son Aaron was born, it was a total shock to everyone. My pregnancy was fairly normal, and there were no complications until the time of labor and delivery.

(Aaron's first night at home)

It was on 1/3/87 after 20 hrs of labor, (failure to progress is a common problem for us carriers of the X-Chromosome that causes XLI) I gave birth to my son Aaron via c-sec. The minute he was born, the doctor knew that something was wrong. Aaron was premature, and the doctor told us he had a gray tint to him, but didn't know what was wrong. Once they started to clean him off, that's when his skin started to crack and peel. It wasn't until 5 days later, after lots of creams, lotions, Saran Wrap, isolation, blood work, and Spinal Tap, that a Dermatologist came into the NICU and said he had Ichthyosis. The treatment at that time was a sponge bath with Alpha-Keri Oil, and then Vaseline from head to toe. Immediately after that first treatment, he was a completely different baby. He finally stopped crying, and the deep fissures all over his body started to heal. It took a great deal of care to keep his skin from getting as bad as it was at birth but it never stopped the everyday peeling/flaking that his skin did then, and continues to do today. Taking care of a newborn with this condition was not easy at all. I had to be sure to follow the doctor's orders when bathing him. I had to be extremely careful with what I used to wash his clothes in, and I was limited to the amount of time I was allowed to hold him - so that the friction did not cause more skin to be rubbed off, causing severe pain. It wasn't easy at all, but once we learned how to deal with the condition, and how to treat it, we continued living our lives as a normal new family.

When Aaron was 2 and I was pregnant again, we took him for a skin biopsy, to find out exactly what type of Ichthyosis he had, and what the chances were of having another baby with it. After weeks of testing, it was confirmed that he had X-linked, and there was a 50/50 chance that a boy would have it. They did an ultrasound, and confirmed that I was having another son, so we knew what was coming. It was also during the time of this skin biopsy that I learned the possibility of XLI being the cause of us losing our first son. It was during the time of our interview with the Geneticist that performed the biopsy on Aaron that we were asked about all pregnancies before Aaron's I informed her of my very first pregnancy and had told her of everything that had happened up to the loss. After hearing my story, she informed us that that first pregnancy was most likely a male, and that the severity of the XLI that he was affected with was most likely the cause of his stillbirth. Learning this news was difficult to deal with as I was still grieving the loss of a child, but it did provide some closure and answer many many questions of what could have happened all those years ago.

Once all of the testing was done on Aaron, our lives continued, and seven months later on 4-16-89, Andrew was born via c-sec, and sure enough he was affected with XLI. We were lucky though that he was not premature, and I was able to tell the staff what treatment they would need to use for his condition, and I was able to be a part of his treatment too because he wasn't in the NICU like Aaron was. Five days later I was sent home, life returned to normal, and I took stock in Vaseline once again.

(Andrew's first birthday)

As the boys grew up, life to me seemed "normal" I learned how to deal with their condition, and never really experienced any type of problems until they started school. Pre-K and Kindergarten wasn't too bad for Aaron, but once he entered the First Grade, and the children saw that his "skin" was different, that the problems with teasing/bulling began. I really don't think the teasing bothered Aaron as much as it bothered me. I was constantly being called each day by the school nurse and asked to come and pick up my son due to the complaint of him having head lice. It didn't seem to matter to anyone that his condition caused his skin and scalp to flake, they just listened to the other children's complaints and dialed my number. It was problems like these that brought me very close to removing my children from school, and homeschooling them myself, but I knew that doing so would only hinder them from having any social skills, and lose the very few friends they had made.

When Andrew started school, we all saw that things were different for him. We saw that he had more academic problems then his brother. He had poor social skills, and it was very hard for him to make friends. He had problems with his speech, and was delayed in the subjects of Reading and Comprehension. The School's Counselor and Special Area Teachers worked with him, but the problems continued. It was finally after Andrew entered the 4th Grade that the Teachers had him Academically Tested to find the reason for his constant outburst's of anger and frustrations. The results of the testing gave us a diagnosis of Clinical Depression that came out as anger. It was difficult for me to accept this diagnosis at first, but once I got him the care that he needed, we saw a complete change in him, and I was able to learn how to work with him, and the others to make things easier for everyone.

The boys view on their skin condition has always been different from mine and each others. Aaron learned to live with it over the years, but I still believe today that he finds it bothersome. The severity of his condition has always and still is worse then his brothers, and he continues to search for medication's that will help with the flaking and itching that he faces each and every day. If you asked Andrew today about his skin condition he would most likely tell you that it's "Awesome" to have Ichthyosis. As he learned over the years about this condition, and how his body is continually growing new skin each day, he finds it a Medical miracle that he's different, and enjoys letting other know that even though his skin is different on the outside, he's no different then anyone else on the inside."

(Andrew and Aaron as adults)

 

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.