Yael

Yael was born in April 1986, Mexico. She was born a collodion baby, with multiple skin openings and had to be transferred to ICU in a different hospital before 24 hours, in life threatening condition. She was diagnosed through a skin biopsy with Ichthyosis Lamellar Eritrematosa, the diagnostics was later confirmed in Houston.

During the first two years Yael had numerous infections, we were misinformed by doctors and health professionals giving incorrect advice.  Good days were those with only scaly skin over 100% of her body, and bad days were those where Yael experienced infections and bleeding.  Meanwhile we learned to separate myths from reality. Sun was good, if rehydrated after a sun bath, swimming was good, if she took a good bath to eliminate chlorine and lotioned all over.  Yael also experienced hearing loss due to accumulation of skin in the ear canal, along with tiredness and asthma like symptoms due to lack of body temperature control.

Next came the social and psychological issues.  Yael went through 3 schools before elementary, experiencing bulling from adults and children alike.  She went from being labeled as mentally disabled to genius in the same school in a couple of months; she was also discriminated in the sports club, swimming pool, and everywhere else.  By the time she got to elementary school she was very happy at home and very sad elsewhere.

When Yael was 2, while trying to get some genetic advice, we met a doctor in Texas, Dr. Moise Levy, who actually knew about Ichthyosis and worked with us in developing her individual treatment options, emphasis on the individual is key to success in rare diseases.  He advised us to wait until after puberty for systemic retinoid treatment, which required us to move to Texas so he could prescribe the treatment requiring very close monitoring. It was through him that we discovered FIRST and translated their booklets to Spanish.  We went to a national convention in San Diego and for the first time met with others with similar skin conditions, a shocking experience for all of us.

After having struggled with ignorance that allowed bullying and discrimination against her, we finally moved to Texas when she was 10 years old, and Yael began taking the retinoids. Here, she was finally free from much of the discrimination that held her so far behind and was able and display her full potential while excelling academically. She won a presidential award in elementary school, joined sports clubs like lacrosse and basketball, and finally began to be accepted by her peers. Yael also took an interest in community musical theater groups which put on plays for young actors; it was there that she found a niche along with the other theater outcasts.

High school years became even brighter, as she made her first real friend who accepted her for who she was. At that time, she was busy taking Karate and dance lessons, as well as participating in study groups for her multiple Advanced Placement courses. She also learned French and German, and travelled to England, France and Spain.  To the surprise of many, she even worked as a lifeguard over the summers. It was at the time, which wonderful science and biology teachers inspired her love for science and showed her the path to the University of Rochester and her future career in Science.

Breaking from the parents’ home to go to college was very hard.  Her body and personality were very frail, she suffered from social anxiety and depression, often getting sick and missing classes.  In spite of this, Yael found the strength to make it through. She found an escape through her studies in Biology, drawing http://ysmyle.deviantart.com, as well as participating in Rochester’s theater program. By participating in many school playswww.rochester.edu/pr/Review/V68N1/feature2.html, she gave herself the social complement to her fully scientific schedule, but with around 20 hours of rehearsal a week plus a full course load of the required courses for a molecular genetics major, she began to get burned out.  After 5 semesters it looked like she wouldn’t make it through her studies. At this point Yael took a break from The University of Rochester.  She found an internship job in Israel with Eli Schprecher, where she was able to experience research in a laboratory, mostly dedicated to Ichthyosis research.  Since Yael did not speak Hebrew and was in a faraway, and foreign country completely by herself,  it was scary for  all of us, but  in the end, it turned into a fulfilling experience giving her not only some valuable laboratory training, but also the confidence of knowing she could handle even the toughest situations on her own.  Later, she took one semester in the University of British Columbia, living four months near her best friend from High School.  Fully energized, she returned to the University of Rochester and graduated on time with the toughest major from the school and a minor in theatre.

Yael, aged 23, on her honeymoon at Disneyworld

In 2004, Yael graduated from The Woodlands High School with honours, in 2008 she graduated from the University of Rochester in Molecular Genetics and in 2009 she married Jonathan Tucker a computer tech studying Materials Science in the University of West Virginia. At that time Yael had published her first postgrad research paper in Genetics while working on infectious diseases in Anthony Maresso’s Laboratory at Baylor College of Medicine in Texas jb.asm.org/content/192/13/3503

Now Yael lives in West Virginia and has just bought her first home.  She is currently working on her PhD in Genetics with a full ORISE Scholarship from the US Department of Energy to simultaneously incorporate genetic and microbiological techniques to enhance geological studies.

The rest sounds easy, but as you know, Ichthyosis does not make life easy; side effects from systemic retinoid are depression and headaches, worsening on withdrawal if she misses a pill. The next challenge is to build her own family, she wants to have her own children with her husband, go through pregnancy and raise those children to be exemplary citizens. We cannot say it will be easy, we cannot say she will not be able to after what she has achieved. We will always be there to help and support her.

We now want to help search across the world people, patients and doctors who had gone through what she is facing next; withdrawal from retinoids, pregnancy and birth when the expecting mom has Ichthyosis.

– written by her father, Simon Tarlovsky, USA

This picture is from a painting made by a renaissance festival artist in oil on canvass of Yael and her husband Jonathan

 

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