Meet Joseph and Faith. They were born with the rare disease Congenital Ichthyosiform Erythroderma.

It is one type of a condition known as Ichthyosis. Ichthyosis is a family of genetic skin disorders characterized by thick, dry and scaling skin. There are many types of ichthyosis and each type ranges in severity. Joseph and Faith were each born with a colloidal membrane, a very thick layer of skin that essentially looked like a very tight wet suit. No one in the NICU knew what Joseph had and we received several confusing and terrifying “diagnoses” before finding out it was ichthyosis. We were left nearly entirely on our own to learn about the disease, discover treatments and navigate the sometimes frightening and often infuriating world of advocating for a special needs child. This “aloneness” is what I believe to be the core of being rare.

For Joseph and Faith, ichthyosis means thick scaling of their skin due to an extremely rapid rate of skin growth. The skin grows so quickly, it layers up and can become very dry, cracked and often bleeds and is at risk of infection. Every skin cell in their body is affected. They burn on average close to 1,000 additional calories a day producing skin, which must be made up for by supplementing their diets.

They are at risk of dehydration because they do not sweat naturally. They overheat very quickly which can be dangerous. They must apply lotions and creams throughout the day to stay moisturized and prevent skin breakage. They use oils, creams, lotions, emollients, acids and baking soda in every imaginable combination. The condition makes them look a bit unusual with white scaly skin, very wrinkled and scaled hands, and thick scales on their scalp. Faith has had several spells of Alopecia.

Ichthyosis is a physical and social lifelong condition. Strangers often stare, make offensive remarks, and ask rude questions. Some have accused me of burning my children or of keeping a dirty home. Together as a family, we are learning to rise above the ignorance and focus on advocacy. There is no cure for ichthyosis, only treatments and the treatments are by no means universal. What works for one child, might not work at all for another. It’s a bit of a shape shifter!

We are grateful for FIRST (the Foundation for Ichthyosis and Related Skin Types). They are the only organization of its kind in the United States dedicated to researching a cure and helping families living with and affected by ichthyosis. Without them, we would have stumbled alone for a long time. We are also extremely grateful to the Global Genes Project and Fund for supporting the Rare community.

7 thoughts on “Joseph and Faith Rise Above Ignorance As They Battle Congenital Ichthyosiform Erythroderma”

  1. Dianna says:

    Thank you for sharing your story. Blessings to Joseph and Faith and their mommy and daddy. I have a granddaughter with EB – not the same condition, yet the aloneness and fear were the same at first. People can be ignorant and rude sometimes, but we will keep spreading awareness.

  2. Dawn M. Erwin says:

    This sounds exactly like my son Jakkob’s story. He has lamellar icthyosis and also was a colloidal baby.

  3. Luke Fiore says:

    Two fantastic kids! I’m very proud to be their grandfather.
    Luke

  4. skyler arnold says:

    I am curious on how to go about making a fundraiser or something of the sorts to help children with this terrible diorder. I know someone whose daughter has this condiotion and she is a shining star with the personality of suns! Her mother has helped me through some difficult times in her life and I would love to give back in anyway possible.

  5. Chris says:

    Skyler,

    If you’d like to set up a fundraiser to help with ichthyosis, please contact me at FIRST, cwassel@firstskinfoundatin.org or call 215-997-7400. I can help you to begin! Thank you!

  6. lynn says:

    my daughter is 12 and was just told that she quite possibly has CIE. She has been treated for a-topic dermatitis and severe eczema her whole life. Some of the stuff i am reading is frightening. She is a highly intelligent student. but with the scaling skin and short stature it makes her an easy target at school. Just looking for some info, words of encouragement, a shoulder to dry on.. this kid has bee through so much…27 doctor appoints in the month of july alone.

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