Awareness

Our journey with Alopecia Areata

In honor of National Alopecia Awareness Month, one of our Mom’s is sharing her and her daughter’s path over the last 10 years since diagnosis. Thank you Stacy for sharing your family and your faith with us!

Our Journey with Psoriasis

When I heard psoriasis, I just had a general idea about a few itchy patches that really could be pretty irritating. But, in my mind, it was just a skin condition. I had no idea how a skin condition could become all-consuming – and how highly our culture valued outward appearance.

Vitiligo diagnosis by age

June is Vitiligo Awareness Month.

Vitiligo is a disease that causes the loss of skin color in patches. The extent to which the skin is affected by color loss is unpredictable. The condition can affect the skin on any part of the body or hair.

Typically, the color of someone’s hair and skin is determined by the amount melanin in the hair or skin, and Vitiligo occurs when the cells that produce melanin die or stop functioning.

Vitiligo affects people of all skin types, but it may be more noticeable in people with darker skin tones.

Preschoolers

There are lots of different colors of skin. Sometimes a person’s skin changes or loses some of its color in spots. This is called Vitiligo. Vitiligo is not something you can catch from someone else.

People with vitiligo need to wear sunscreen every day to protect their skin from sunburn. There are some medicines and things that people can try to get some of their skin color back if they want to. Sometimes the color comes back and sometimes it doesn’t. Having vitiligo doesn’t hurt a person’s skin, but sometimes people might have different feelings about their skin color changing.

One way you can be a good friend to someone with vitiligo is to let them tell you about their skin when they feel like talking about it or to let them stay quiet about their skin when they don’t feel like talking about it.

School Age

Our skin is made up of a lot of little building blocks called cells and different cells have different jobs.

One of the types of cells in our skin is in charge of the color or pigment in our skin. When Vitiligo happens, some of the skin cells that create color in the skin just stop producing it. Sometimes they stop making the color for a long time and sometimes they only stop for a short time and the color comes back after a little while.

Doctors aren’t sure exactly why vitiligo happens, but they have some ideas. They do know that it doesn’t come from a germ and you can’t catch it (and it is not contagious).

Even though skin that has vitiligo isn’t making all of the same pigment that it used to, it is healthy in every other way and can do most all its jobs. Skin that has vitiligo can still protect a body from germs and help regulate body temperature (like by sweating).  The one thing it can’t do is protect itself from sunburn, so people with Vitiligo just need to wear sunscreen daily.

All types of skin need sunscreen; skin that does not have vitiligo has some natural protectors that help keep them safer from sunburn. Skin that has vitiligo is missing some of these natural protectors.

One way you could be a good friend to someone with vitiligo is ask them, “would it help if I sometimes answered other people’s questions about your skin with you? What would you like me to say?”

Teenagers

There are cells in our body called melanocytes. Melanocytes produce melanin which is where the colors or pigment in our skin comes from. When someone has vitiligo some of their melanocytes aren’t producing melanin (or color) in certain parts of their skin.

Doctors think that this could have something to do with the immune system, but there is still a lot to learn about vitiligo and why it happens. The truest answer is we still aren’t completely sure why this happens. We do know that it doesn’t come from a virus or bacteria and that it isn’t anyone’s fault that it happens. We also know that it doesn’t indicate cancer.

Sometimes, but not often, vitiligo can be a signal that the body needs extra help in some other way such as another condition that requires medicine. So visiting a dermatologist and being examined properly is important.

Skin with vitiligo can still protect the body from outside elements like viruses and bacteria, but it cannot properly protect itself from the sun. This is because the pigment (or melanin) that our skin produces provides a natural shade for our insides. If the melanin cannot be produced to make shade, then that natural protection is missing. So, people that have vitiligo should wear a broad spectrum sunscreen every day.

It is otherwise healthy skin. One good way you can be a friend to someone with vitiligo is simply to treat them the way you would like to be treated. They may have days they feel good about their skin or days when they feel disappointed (just like everyone else!) you can be a good listener and be encouraging.

What has ACHFTS community done for your family?

At our recent Family Day, we asked a few of our parents what A Children’s House for the Soul has done for them and their families. Our parents and families are such a blessing and we are honored to work with them towards our mission of helping kids love the skin they’re in!

How to explain Ichthyosis to children at different ages

May is Ichthyosis Awareness Month.

“Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. Each year, more than 16,000 babies are born with some form of ichthyosis. A recent study has determined that approximately 300 babies are born each year with a moderate to severe form of ichthyosis. Ichthyosis affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.” (Source: First Skin Foundation)

When your child is diagnosed with Ichthyosis, you’ll likely need to explain the disease to not only your child as they grow up but also siblings, cousins, friends, and acquaintances. We’d like to break down some examples of age appropriate ways to explain Ichthyosis.

Preschoolers

A person who has ichthyosis was born a bit different and has skin that is very very dry. While medicines and lotions can help their skin, it cannot make their ichthyosis go away. Skin with ichthyosis can be very sensitive, which means it needs to be treated gently.  You cannot catch ichthyosis from another person.

One way you can be a good friend to someone with ichthyosis is to wash your own hands regularly to keep from spreading germs near their sensitive skin.

School Age

There are different types of ichthyosis, but in general, it means that a person has very dry skin that is either very thick or very thin. It is not contagious; you cannot catch it. It is something that a person is born with.  This means it is safe to sit by, or hug, or high five someone with ichthyosis.

All of our skin gets new skin cells all of the time. Our old skin cells die and get brushed off and go away and new skin cells come to the top. In most types of skin this happens so quickly you can’t really see it. In skin with ichthyosis, it happens at a different pace so those dead cells can be more easily seen.  Ichthyosis can sometimes cause skin to break more easily and can make skin more sensitive and more tender. This is why many times people with ichthyosis might choose to wear long sleeves or long pants to help protect their skin while they work and play.

Even though a person with ichthyosis might look red, does not mean that their skin is hurting (or have a sunburn) and even though their skin might look brown or flaky does not mean they are dirty. It is just one of the ways that their skin looks and acts differently from skin that does not have ichthyosis.

Teenagers

There are many different types of ichthyosis, but in general they are genetic conditions that impact the skin. This means that both the mother and father of a person born with ichthyosis were carriers of the gene. There are different types of ichthyosis, but in general, it means that a person has very dry skin that is either very thick (in some areas) or very thin (in others).

Our skin is our body’s largest organ and has very important jobs in our health such as protecting us from germs and regulating our internal temperature. People who have ichthyosis have to take special precautions and overcome challenges to protect their bodies from infection and overheating. There is no cure for ichthyosis but treatment includes keeping skin very well hydrated through ointments, medications and soaks.