It All Seems Worthwhile

February 10, 2018

 

A long time ago (April 10, 1955) in a land far, far away (Miami Beach, Florida) I was born. I had swollen hands and feet and this weird extra skin on the back of my head. They suspected Turner syndrome right away, but I wasn’t officially diagnosed until I was about 6 years old.

 

Turner syndrome is a chromosomal condition that affects approximately one in 2,000 females, typically causing short stature and infertility. It is a fluke that occurs at conception, or shortly thereafter, when one of two X chromosomes is either missing or partially missing. Because of Tuner syndrome, I am 4’ 5” tall (?).

 

Turner syndrome is not the best deal, but it hasn’t kept me from living a very full life. My philosophy has always been, “if life hands you lemons … make lemonade.” Professionally, I have a Master’s Degree in Computer Science and I have been a business application software developer for more than 35 years.  My jobs have taken me to Philadelphia, PA; Overland Park, KS (a suburb of Kansas City); Atlanta, GA; and currently Raleigh, NC.

 

My childhood dream of being an entertainer came true when I was in undergrad school in central Florida. On the weekends and summer, I worked at Disneyworld as Mickey and Minnie Mouse. Since then, I have occasionally been active in Community Theater, especially children’s theater.  I’ve played such roles as an elf, a dwarf, a mole, an alien, a matchmaker, and a wicked witch.  It’s been a lot of fun!

 

I’ve never married, but I have dated all Seven Dwarfs (not to mention numerous frogs).  When I was a child, when I complained about being half the size of everyone else my age, a lot of very well-meaning adults told me, “don’t worry, you’ll grow.” 

 

No one told me about Turner syndrome until I happened to overhear a phone conversation between my mother and the endocrinologist. I was fifteen at the time.  It wasn’t until I was 29 that I met another person with Turner syndrome.  

 

I was 33 when the Turner Syndrome Society of the US was started, and I have been a zealous member ever since. For over 30 years, I have been a very active and integral part of the Society, at both the national and local levels. At the local level, I have been a chapter leader (Philadelphia and Kansas City), newsletter editor, membership coordinator and website editor. At the national level, I have served on numerous committees.  I’ve also served on the Board of Directors as Treasurer, President-Elect (Vice President), and President. I was once a part-time contracted staff member.

 

The reason I am so passionate about the Society is because there wasn’t a support group for me and my parents when I was growing up. I didn’t have the chance to meet other girls “like me.” My mother didn’t have the opportunity to talk to other parents and discuss her concerns. She had no idea what questions to ask the doctors. She had no idea what to tell me and when.

 

The time, effort, and energy all seems worthwhile when I watch the girls with Turner

syndrome at our annual conference enjoying themselves, laughing, and bonding with each other. It all seems worthwhile when I have the chance to encourage parents when they find out their daughter has Turner syndrome. It all seems worthwhile when I think of all of the wonderful people I have the opportunity to know.

 

I am honored to have a part in shaping the Turner Syndrome Society of the United States and I hope to always play a part in its mission: “to advance knowledge, facilitate research, and provide support for all those touched by Turner syndrome.”

 

Barb Flink is well-known to the TS community.  She has been a member of TSSUS  since its inception, and is one of only two women who has attended every National TSSUS Conference.  Barb can be found surrounded by young families and girls with TS at conferences, likely due in equal parts to her dedicated volunteer outreach and mentorship, paired with her love of children's theater and dramatic expression.