Turner Syndrome: Spread Awareness, Save Lives

My name is Sidney Weisenberg and in April, 2021, I will become a Bar Mitzvah.  As part of my journey toward becoming a man in the Jewish faith, I am participating in “Tikkun Olam”.  Tikkun Olam is a project in which I help - or do something kind for - my community.  I chose to do a project inspired by my Aunt Andrea.

My Aunt, Andrea Levey (“Aunt Annie”), died way too young.  She was only 51 years old.

On October 2, 2018, my Aunt woke up experiencing severe and sudden onset of chest pain and she felt very light-headed.  She called 911 and an ambulance came and took her to the Emergency Room.  The ER doctors were informed that Aunt Annie had Turner Syndrome.  She was given morphine for the pain, an EKG was performed, and her enzyme levels were checked for a possible heart attack.  All of my Aunt’s levels were normal and, except for managing her pain, for several hours nothing else was done to help her nor to further investigate what was causing her severe symptoms.  Then, suddenly, in the early afternoon Aunt Annie was rushed to the Cardiac Cath lab because the doctors believed that she was having a heart attack.  The physicians soon realized that she had an aortic dissection which was the reason she was in so much pain.  This aortic dissection did eventually cause Aunt Annie to have a massive heart attack. 

My Aunt was air lifted to the University of Iowa Hospitals and Clinics to have emergency surgery.  But it was too late.  There was too much damage to her heart.  Aunt Annie died on October 4, 2018.   

Aunt Annie was intelligent, kind, and wonderful.  She had an infectious smile that touched many throughout her life.  She was a Special Education teacher who most recently taught at Walcott Elementary School in Iowa where she was respected and appreciated for the huge positive impact she made in the lives of everyone at the school - teachers, students, and staff.

How will donations to Lurie Children’s Hospital of Chicago make a difference?

The goal of my Tikkun Olam project is to raise awareness about the risk of aortic dissection in women with Turner Syndrome.  The rate for acute aortic dissection is increased by more than 100-fold in young and middle-aged women with Turner Syndrome and it is my hope and goal that by expanding the awareness of this increased risk . . . lives will be saved.

Specifically, I want to provide education kits to families who are affected by Turner Syndrome.  These welcome kits will be given to new patients and their families at the Turner Syndrome Program of Lurie Children’s Hospital of Chicago.  The welcome kits will help to explain Turner Syndrome, in general, and will provide helpful information about health complications associated with Turner Syndrome (including, of course, aortic dissection). I believe that this information will allow families to become self-advocates and help them feel supported and hopeful in their life-long journey.  

I am also raising money to help fund education for Lurie Children’s emergency room physicians to increase awareness for early detection of aortic dissection in Turner Syndrome patients.  It is my hope that, someday, emergency room physicians across the country (and throughout the world) will receive this education.

All donations will benefit the Turner Syndrome Program and Lurie Children’s Hospital of Chicago.  

Why Lurie Children’s Hospital of Chicago?

My brother, sister, and I have been going to Lurie’s for healthcare our whole lives.  When Aunt Annie passed away, we discovered the Turner Syndrome Program at Lurie Children’s Hospital of Chicago.  When she was growing up, my Aunt did not have access to such a multidiscipline coordinated approach to treating Turner Syndrome.  In fact, my Grandma recalls that when she found out that my Aunt had Turner Syndrome (at three weeks of age, Andrea was diagnosed with pyloric stenosis and had to have surgery) the explanation of her condition, her prognosis, and treatment were barely discussed at discharge.  Thankfully, A LOT has changed since then but I know that there is still more good work to do.

So many girls and teens and their families already greatly benefit from the Turner Syndrome Program at Lurie Children’s Hospital and my family and I would like to provide them with additional support, in memory of our Aunt Annie.

I hope you will consider making a difference in the life of a Turner Syndrome girl or teen!  Thank you!

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For more information about Turner Syndrome and the Turner Syndrome Program of Lurie Children’s please go to:  https://www.luriechildrens.org/en/specialties-conditions/turner-syndrome-program

You can maximize donations through matching gift programs. Check with your Human Resources department to see if your company has a corporate matching gift program. Lurie’s Matching Gifts Tool, https://www.matchinggifts.com/luriechildren_iframe can be helpful in determining which companies match donations.
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What is Turner Syndrome?

·        TS is a genetic condition found in females only and is caused by a missing X chromosome

·        TS is the second most common genetic disorder

·        1 in 2,000 Females are affected by TS

·        There are more than 3,200 women affected by TS in Illinois

·        It is estimated that more than 70,000 women and girls in the United States have TS

·        No known difference in rate of occurrence based upon race, nationality, location, socioeconomic factors, or exposure to environmental hazards

·        Heart anomalies exist in 50% of the TS population and are one of the leading causes of death in TS patients

·        Lifelong health concerns with ongoing monitoring needed

·        No cure for TS but treatment options are available


                  Benefiting:

                 Ann and Robert H. Lurie
                 Children's Hospital of Chicago