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Expert Insights

Our Personal Experience With Alopecia Universalis & Our Warrior With This Rare Disease

Our Personal Experience With Alopecia Universalis & Our Warrior With This Rare Disease
08 March 2019

We continue to recognize Rare Disease Day and the rare disease community joining together to raise awareness of rare diseases, with another personal story from one of our employees on her daughter’s struggle with Alopecia Universalis. Alopecia Universalis is an advanced case of Alopecia Areata, an autoimmune disease, where the immune system mistakenly attacks hair follicles, causing the hair to fall out. It affects up to 650,000 Americans at any given time, according to “What’s New In Alopecia Areata Research?”

Liljana Trenova

In observance of Rare Disease Day, I would like to raise awareness for a rare disease that many people do not know much about.

My daughter, Natasha, who is now 12 years old, has lived with Alopecia her entire life. It started with Alopecia Areata (AA) when she was just one year old. One morning, I picked her up from her crib, and I immediately noticed a bald spot on the back of her head, just like that, overnight. I took her to her pediatrician the next day and got a referral to pediatric dermatology. She got a whole-body check and a diagnosis of Alopecia Areata.

Alopecia Areata is an autoimmune disease where strands of hair on the scalp fall off, leaving bald spots. Most bald spots are able to be covered with other hair and remain, mostly, unnoticed. We spent several years using topical treatments that were effective temporarily.

When Natasha was eight years old, the Alopecia took a turn for the worse. In the span of two weeks, when she was only in second grade, all of Natasha’s hair fell out. Her bed sheets and pillow were full of hair every morning; her desk at school was full of hair.

At this stage, her new diagnosis became Alopecia Universalis (AU). Not only did she lose the hair on her head, she lost her eyebrows and eyelashes, and funny enough, all hairs in her nose and ears were gone, too. She became a very unique patient at a variety of doctor’s offices, allowing physician residents to learn from her, have photos taken, and be presented at conferences.

AU is the worst case (subtype) of Alopecia Areata, and according the NIH Genetic and Rare Disease Information Center, the occurrence of AU is one in 4,000 people. Only about 10% of AU sufferers experience full recovery.

While Natasha was a great teaching case for new doctors, and her whole body still functioned pretty much the same, this change in appearance was a lifechanging event for her, as an eight-year-old girl. As Natasha started wearing beany hats and scarves, people started wondering what was happening with her. The most commonly known reason for losing hair is undergoing chemotherapy for treating cancer, and that is what families around us feared. Natasha felt every look, and I got lots of questions. It was overwhelming, and we had to take several actions.

I embarked on a mission to raise awareness about this disease at school and especially in her class, mainly to prevent bullying, and have continued to do so ever since. I have participated in many school events to raise awareness and for acceptance of our differences.

While I was working on raising awareness, Natasha was undergoing intense psychotherapy for over a year, to help her deal with her grief and acceptance of her new reality. The whole process of her losing her hair was very depressing, and it felt like she was saying goodbye to the Natasha with hair and had to welcome the new Natasha, with no hair, anywhere on her body. It was painful for her and for us as parents; we all felt very powerless. There was no proven long-term therapy, and this remains the case today.

The best investment in treatment, by far, has been the endless hours spent in psychotherapy with a skilled pediatric psychologist who did wonders for Natasha’s acceptance of her reality, her unbreakable self-esteem, and confidence.

Last year, in September 2018, Natasha’s confidence came through in a public way when she showed off her bald beauty in Fashion Meets Alopecia 2018, a modeling showcase with other models with Alopecia. This event boosted her confidence.

Even more and proved to her that she can live life to the fullest without a single hair on her body.

It may sound silly that losing hair may cause such significant change in life, but when you think about it, our hair is literally tied to our identity. Personal documentation often has a box for “hair color,” and typically, people describe others by hair color or length, among other factors. Natasha has lost that description. For Natasha’s passport photo, she was not allowed to wear her scarf/beany because it was not due to a religious belief, and her passport photo shows her bald head.

We have learned to really capitalize on the few benefits that come with no hair:

  1. No head lice (yes!)
  2. Extremely smooth and soft skin (leaves every woman jealous)
  3. No time spent on hair, brows, or lashes for dance performances or competition

Although Natasha has learned to live with Alopecia Universalis, she remains a 12-year-old girl, who still wants to have hair and be like everyone else. She has become a Warrior who does not let AU rule her mood and ruin her fun.

As someone who works in this industry for many years, we have been monitoring pediatric clinical trials for AU. To this day, a simple search on clinicaltrials.gov shows that there have not been any clinical trials for pediatric patients in the United States for this rare disease. One study has just been posted for adolescent and adult patients, but still, the pediatric population remains .

Even though rare diseases, like Alopecia Universalis, affect very few people, they do cause a lot of damage. Some damage may be to anatomy or physiology; other damage may be psychological and may have life-long lasting effects if not addressed on time, and in some cases, may lead others to suicidal ideation and suicide.

Rare diseases, especially rare diseases in children, are important to study. Even if a drug or therapy saves just one, it is still one life saved from leaving too soon. Every adult and child matters. Do not stop your pursuit for answers and solutions, if not for your child or family member, for others like my daughter. It is worth it!

A poem written by Natasha in second  grade:

I am
-by Natasha Oliver at eight years of age

I am a caring girl who likes unicorns and has Alopecia Areata
I wonder if unicorns are real
I hear myself laughing as I jump on the clouds
I see a land of pink made just for me
I want to be a famous artist when I grow up
I am a caring girl who likes unicorns and has Alopecia Areata

I pretend that I rule all unicorns tall or small
I feel my pet Puffu the unicorn on my lap
I touch Puffu’s fluffy pink head
I worry that some animals might all go extinct
I cry when I think about dying
I am a caring girl who likes unicorns and has Alopecia Areata 

I understand that not anyone can live forever
I say you can’t be judged even if you have a disease that doesn’t have a cure
I dream about me being the first Alopecia Areata person to be cured
I try to make peace with my big smallish brother
I hope there will be a cure for Alopecia Areata
I am a caring girl who likes unicorns and has Alopecia Areata

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