My Story: Finding My Own “Normal”

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The Turner Syndrome Foundation’s (TSF’s) My Story blog series highlights the experiences of individuals, families, and caregivers affected by Turner syndrome (TS). Their stories have an incredible ability to inspire others and make a positive impact on the TS community. This month, we share Lisa’s story, which highlights the challenges TS patients can have in developing social skills and navigating relationships, and how to cope with them. Let’s be OK with not being “normal”!

Lisa’s Story

Lisa is a woman with TS who was diagnosed at age 12, after a misdiagnosis at 6. She has learned to navigate the social challenges that come with TS and has found her own “normal.”

My Diagnosis

At 6 years old, I was (mis)diagnosed with Silver Dwarf Syndrome at Stanford Children’s Hospital, primarily due to my short stature. This was back in the mid-1970s, and so much more is known now than back then. At 12 years old, my step-mother wanted to find out more about Silver Dwarf Syndrome, and we went back to Stanford. The doctor at that time (1981) took one look at me and knew I had TS instead. He ordered a karyotype to (correctly) confirm his diagnosis. 

Beginning Treatment

At that time, I was immediately started on growth hormones (Anavar). I began regular appointments for routine check-ups to see if my growth plates had fused. I also had other tests such as kidney function and shape (all looked good, but my kidney is horseshoe shaped). My parents and I were also told about the need for me to eventually be on hormone replacement therapy (HRT) to go through puberty. I would start HRT around the time my bones fused so I could get as much height as possible (I ultimately reached 5’).

Finding My Own “Normal”

My family was not told much about the emotional–and particularly, the social–challenges I would face. I don’t believe much was known yet. I do wish more had been known at the time, so stronger intervention could have been done besides the doctors telling my folks to just treat me normally. I’m not “normal.” I am, however, high-enough functioning that an outsider wouldn’t necessarily know what was going on. But enough to know what I’m missing. And I’m OK with not being “normal.”

I know how to be a good person, but because of TS (at least in part), I don’t feel like I know how to be a good friend. I feel like I missed out on that peer socialization that would have let me gain and practice those skills. As a result, I don’t have many friends. I don’t socialize much with others. I haven’t had a romantic relationship in over 20 years.

It is also hard to wrap my mind around how close I came to being a miscarriage. I don’t mean HAVING a miscarriage, but BEING a miscarriage. That’s a distinction others don’t always grasp.

TS & Social Skills

Brain Balance

While patients with TS typically excel in their verbal skills, non-verbal processes can be difficult. Because of this, many patients with TS struggle with certain aspects of social situations and

relationships. Social anxiety, difficulty making friends, and difficulty reading certain (non-verbal) social cues can all be a struggle. “Psychosocial problems also become obvious at this age (6-12). Poorer social skills have consistently been described as affecting all aspects of social behavior and functioning,” according to an Endocrine Connections article (see link below).

An article in the Journal of the American Academy of Child Psychiatry (see link below) looked at a study done comparing patients with TS and patients of short stature not diagnosed with TS. They concluded that, while short stature does not on its own contribute to social struggles, it is a factor to consider. For many patients with TS, there is not only the trouble with non-verbal communication to navigate. Many are also faced with low self-confidence, hormonal deficiency and delays, and cognitive functioning delays.

Navigating Non-verbal Learning Disorder (NVLD)

Social struggles can be connected to Non-verbal Learning Disorder (NVLD), which manifests itself in many of the symptoms mentioned above. It can also lead to feeling insecure in social situations, difficulty in romantic relationships, and depression and anxiety. A video on Butterfly TV on YouTube (see link below) also notes that NVLD can bring struggles in school with math and increased sensitivity in social interactions with others.

University of Arizona

What You Can Do

LD Network

There are many tools patients with TS and those who support and care for them can use to cope with social challenges. An article from Wiley Online Library (see link below) notes that many patients with TS reported feeling “out of sync” with peers. But they were also very aware of these social struggles and would be open to any social skills training that might be available. Building and making available training that might help patients with TS with their social

skills would be a great step towards addressing some of their challenges.

In TSF’s April 2022 blog post Social Skills and Relationships, we noted: “To foster an inclusive environment, it is important to be aware of how TS can affect social skills and relationships. Remember to embrace those with differences and engage in social interactions with acceptance and patience.” Bringing more awareness to TS can help medical professionals find new ways to support their patients from a social standpoint. 

One of the greatest tools available to patients with TS is the invaluable experience of being a part of a community and having a support system. Whether it’s family, friends, or other TS patients, within a community we are able to show each other acceptance and patience. We can stand alongside each other and encourage each other through the difficult times. There is nothing as powerful as sharing an experience you are going through, having someone say “Me, too,” and realizing you are not alone. Check out TSF’s online, private Star Sisters support group.

Share Your Story

Every individual and family affected by TS deserves to be heard. For those who wish to share their personal story, we provide you with that platform. Our platform also allows you to raise funds for this cause, which can multiply your impact.

When you share your story, you are enabling us to tell others about the needs of this community to seek positive change. Let’s normalize being OK with not being “normal”!

If you are interested in sharing your story, you can submit your information here.

Written by Lisa and Brooke Gonsalves, TSF volunteer blog writer. Edited by Susan Herman, TSF Blog Coordinator. Designed by Jasmine Persaud, TSF volunteer blog designer.

© Turner Syndrome Foundation, 2023

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