Renata the Megadoll Shero who has Harlequin ichthyosis

  • Category: SHERO
  • Sub Category: Dolls
  • Published Date: Oct. 4, 2022, 10:31 p.m.

Meet the Megadolls Shero, Renata. Her name means "Reborn." Renata was born with a rare skin condition called Harlequin Ichthyosis.

 

Renata is highly artistic. She loves making beautiful things from odds and ends that she collects. Most of all, she loves sprinkling glitter on her creations. Renata wants to make others happy by creating beautiful things out of ordinary stuff.

 

What is harlequin ichthyosis?

Harlequin ichthyosis is one of 20 different types of ichthyoses – a skin condition. This condition causes a build-up of skin. There are two ways that this could happen: either the person produces new skin cells too quickly, or their old skin cells don't shed (fall off) fast enough.

 

Their skin becomes very thick and can lose its ability to stretch and move freely. Eventually, the skin may crack to make it easier for the person to move.

 

Harlequin ichthyosis is a medical condition that some babies get from their parents. Usually, the parents don't look like they have harlequin ichthyosis – they only carry the condition and then (unknowingly) pass it to their baby.

 

Harlequin ichthyosis is a rare condition. Less than one of every 300,000 babies born is diagnosed with harlequin ichthyosis. Not all babies born with harlequin ichthyosis survive because they may struggle to eat and breathe or get a bacterial infection. The life expectancy for persons with harlequin ichthyosis is between 10 months and 25 years.

 

How can you see that someone has harlequin ichthyosis?

Babies born with harlequin ichthyosis are covered with plates of thick skin. This skin often looks like scales and tends to crack or split apart.

 

Because babies born with harlequin ichthyosis' skin is thick and tight, their mouths and eyelids could be pulled inside out when they are born. This puts a lot of strain on their eyes and could affect their breathing. They may also have ear deformities. This is usually because their skin is so tight and can heal when the skin starts to shed in a few weeks.

 

Older children or adults with harlequin ichthyosis' skin could look shiny and tighter than other people's, as if it is stretched. Their skin could be slightly red. Persons like Renata may also have some areas where the skin is peeling. Sometimes they could have very thin hair or be wholly or partially bald.

 

What a person with harlequin ichthyosis may be going through.

Someone with harlequin ichthyosis needs to take extra good care of their skin. Their bath time routine will likely include other things that other people don't necessarily have to do every day.

 

People with harlequin ichthyosis, like Renata, need to be vigilant (extra careful) about putting moisturizer on their skin after they take a bath or shower. In extreme cases, they may need to apply something called an emollient to their skin every hour. An emollient is a particular moisturizer that soothes and hydrates the skin. It also creates a protective layer on the skin to keep moisture in.

 

They also need to rub their skin with a specific stone called a pumice stone. This type of stone is rough and helps remove any extra dead skin cells that other people's skin usually gets rid of.

 

Renata needs to brush her hair very well every time she washes it. This helps her to remove any old skin cells from her scalp.

 

Renata's skin can sometimes crack or split if there is too much build-up of old skin, and it gets too thick. This is painful and can cause infections. Renata needs to take particular medicine called antibiotics to help her skin heal when this happens.

 

Persons who have harlequin ichthyosis have difficulty regulating their body temperature. Most people's bodies do this naturally. We shiver to get warmer when it is cold and sweat to cool down when it is hot. Renata's body struggles to do that. She has an especially difficult time sweating, which could cause her to overheat quickly.

 

If Renata is not careful to remove dry skin, it could become too thick. This can make it difficult (and sometimes painful) for Renata to move specific parts of her body. If the skin grows too much around her ears or eyes, she may have difficulty hearing or closing her eyes. Sometimes she needs to apply an eye lubricant (emollient or moisturizer) to help with the build-up of skin around her eyes.

 

How can you interact with someone with harlequin ichthyosis?

Like Renata, someone with harlequin ichthyosis looks different from you and me. Sometimes, when you encounter someone who looks different from you, you could feel uncomfortable and unsure how to behave or interact with them.

 

Remember that while we all look different outside, we are the same inside. We all have hopes and dreams. We all want to achieve things in our lives. We all want to be loved and accepted. We all want friends to laugh and make memories with.

 

You may be curious about the physical differences you see when meeting someone like Renata. You may want to look at the attribute (the thing) that makes them different from you. You probably don't mean to stare and seem rude, but you have many questions.

 

People with physical differences usually don't mind being asked questions. In fact, in most cases, they welcome them. By asking questions, you show that you are interested in them and their experiences – which is the best way to make friends.

 

Sometimes people will try so hard not to be rude and stare that they avoid looking at someone who is physically different. They don't do this to be disrespectful – quite the opposite. They are so worried that something they do or say might be disrespectful or offensive that they avoid or ignore the person with a physical difference. This could be extremely hurtful to the other person who deserves acknowledgment. To be seen and heard and treated like any other person.

 

Making eye contact is the best way to acknowledge a person with physical differences without staring at them. Making eye contact with someone shows that you are listening to them, paying attention, and being interested in what they are saying.

 

People like Renata were born with harlequin ichthyosis. They may realize they look different from others, but their skin condition is normal for them as usual and natural as your skin is to you.

 

Sometimes they still have to work through difficult emotions relating to their condition. But, in many cases, they already have and are happy and content. Showing pity (feeling sad or sorry for someone) or looking down on them because of their condition will do more harm than good. It could cause the other person to feel bad about themselves, and you will lose out on making a new friend.

 

If you want to build a friendship with someone like Renata, look for similarities – things you have in common. You might both enjoy riding your bicycles or making your jewelry. When you discover something you both love, the differences don't matter.

 

You don't need to take special care of someone with harlequin ichthyosis. They can happily and easily participate in most activities that you both enjoy. Renata and people like her may need to do certain things to stay safe and healthy (like regularly applying moisturizer). They have been doing this all their lives, and it has likely become a part of their everyday routine. You can, however, ask if there is something they need help with. If they need you to do something, they will let you know. Listen to what they need and how you can help before jumping in.

 

Renata and other Megadolls Shero paper dolls are only available by signing up for a subscription. She is excited to make friends with your other Megadolls. Check out the other dolls who will love playing with Renata. You can view and download free clothing or print free blank clothing templates that you can decorate yourself – Renata will love that!

With Megadolls, may we all inspire, encourage kindness, experience creativity, and promote meaningful play with awareness and compassion for others.

 

 

References:

Harlequin Ichthyosis - NORD (National Organization for Rare Disorders) (rarediseases.org)

Juvenile idiopathic arthritis in infants with Harlequin Ichthyosis: two cases report and literature review | Italian Journal of Pediatrics | Full Text (biomedcentral.com)

Ichthyosis - NHS (www.nhs.uk)

Emollients - NHS (www.nhs.uk)

Harlequin Ichthyosis – A Case Report – Irish Medical Journal (imj.ie)

Harlequin ichthyosis | Genetic and Rare Diseases Information Center (GARD) – an NCATS Program (nih.gov)

Harlequin Ichthyosis | Foundation for Ichthyosis & Related Skin Types, Inc. (firstskinfoundation.org)

Harlequin ichthyosis | DermNet NZ

Harlequin Ichthyosis: What It Is and Who Is at Risk (webmd.com)

Harlequin ichthyosis: MedlinePlus Genetics

Ichthyosis FAQ | Foundation for Ichthyosis & Related Skin Types (FIRST) (firstskinfoundation.org)

Harlequin ichthyosis: MedlinePlus Genetics

Dispelling the Myths About Ichthyosis | Foundation for Ichthyosis & Related Skin Types (FIRST) (firstskinfoundation.org)

Life as a Teen with Harlequin Ichthyosis (School, Boys, Drama and a Rare Skin Disorder) - YouTube

Etiquette: Interacting with People with Disabilities - Respect Ability

IDHS: People First: A Guide to Interacting with People with Disabilities - DHS 4151 (state.il.us)

Disability Etiquette: How to Show Respect to People with Disabilities (vantagemobility.com)

Dealing with the Disabled - FamilyEducation

Ichthyosis in the Newborn (nih.gov)

 

Images:

Search media - Wikimedia Commons

Harlequin ichthyosis Images, Stock Photos & Vectors | Shutterstock

56 Ichthyosis Photos and Premium High Res Pictures - Getty Images

 

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sadasdasd Oct. 17, 2022, 7:35 a.m.