TSF Celebrates Hispanic Heritage Month

Each year, we observe National Hispanic Heritage Month from September 15th to October 15th by celebrating the histories, cultures and contributions of individuals in the U.S. whose ancestors came from Spain, Mexico, the Caribbean, and Central and South America. The Turner Syndrome Foundation (TSF) honors Hispanic Heritage Month by sharing the story of Angela, a Colombian-American with Turner Syndrome (TS).

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Hispanic Heritage Month

We celebrate Hispanic Heritage Month from September 15th to October 15th to recognize Hispanic-American champions and their achievements, as well as contributions that have inspired others to achieve success. Hispanic Heritage Month began in 1968 as Hispanic Heritage Week under President Lyndon Johnson. Twenty years later, President Ronald Reagan expanded it to the month it’s known as today. It was enacted via Public Law 100-402 on August 17, 1988.

September 15th is significant because it’s the independence day for the Latin American countries Costa Rica, El Salvador, Guatemala, Honduras and Nicaragua. In addition, Mexico and Chile celebrate their independence days on September 16th and September 18th, respectively. Columbus Day, also known as Indigenous People’s Day or Día de la Raza, is celebrated on the second Monday of October, during Hispanic Heritage Month.

Hispanics in the U.S.

Hispanics (some people prefer Latinos or Latinx) are anyone of Spanish culture or origin, regardless of race. This includes those who are Cuban, Mexican, Puerto Rican, South or Central American. According to the 2019 U.S. Census Bureau, there are an estimated 60.5 million Hispanics living in the U.S. They represent 18.4% of the country’s total population. It is projected that, by 2060, the number of Hispanics in the U.S. will reach 111.22 million.

In 2019, among Hispanic subgroups, Mexicans ranked as the largest, at 61.4%. Following this group are: Puerto Ricans (9.6%), Central Americans (9.8%), South Americans (6.4), and Cubans (3.9%). That same year, California, Texas, Florida, New York, Arizona, Illinois, New Jersey, Colorado, Georgia, and New Mexico were the states with the largest Hispanic populations. Interestingly, that same year, 30.8% of Hispanics were under the age of 18, compared to 18.6% of non-Hispanic whites.

Over the past decades, the number of Spanish speakers has quadrupled. According to a study published by Instituto Cervantes, there are 41 million native Spanish-speakers and 11.6 million bilingual speakers in the U.S. Experts predict the number of Spanish-speakers in the U.S. will reach 138 million by 2050 — making it the largest Spanish-speaking nation in the world.

Angela's Story

My name is Angela, and I would like to share my story as a Hispanic/Latina woman with TS living in the U.S. I was born in Bogotá, Colombia. I moved to the U.S. in 1993 with my dad, his wife (who has been like a second mom), and my brother when I was 12. Since I already knew English from studying at a bilingual school, I was fortunate that I did not have to face the same challenges many Latinos face, having to learn it while adapting to a new culture.

My father already had his residency in the U.S. when we moved here and obtained his citizenship while my brother and I were young, so we did not face any significant legal challenges. My only major challenge in coming to the U.S. was being far away from my other family members, especially my mom and grandma. We coped with this the best we could, speaking on the phone often and traveling to see each other whenever possible.

During my third year of college, in February 2002, I met my loving husband. We have been happily married for 16 year and live in Festus, Missouri. I work from home as a Spanish-to-English and English-to-Spanish interpreter.W

Diagnosis

Before my diagnosis, my parents noticed anomalies in my growth and development. We visited several doctors before they decided to do a karyotype study. I recall going to see the geneticist once during the process. When I was 10 1/2 years old, I was diagnosed with TS in Colombia. After receiving my karyotype results, my mom, who was a cardiologist, told me about my diagnosis. She lovingly explained that, as she called it, one of my “teeny cells”, or chromosomes, had “missed the bus,” to help me better understand it. Shortly after the diagnosis, I was referred to an endocrinologist. My first visit with them was unpleasant due to her lack of tact in explaining some things. My parents then decided to switch me to another doctor right away.

I feel fortunate that, besides being slightly scared after that first visit, being diagnosed wasn’t too stressful or complicated for me. This was for several reasons. First, I was too young to be fully aware of all of TS’s effects on my life. Second, I had loving, supportive parents who never treated me differently because of my condition. They were actively involved in ensuring I was treated well by doctors for my TS. My mom’s work made it possible for me to get my growth hormone therapy for free. Even after we came to the U.S., she always tracked my medical appointments and was always available to consult with and lend her unconditional support.

My dad was the one who got me established with the endocrinologist and other doctors in the U.S. We were fortunate to be referred to a Spanish-speaking endocrinologist, with whom we were able to effectively communicate. I know many parents of children with serious medical conditions like TS who haven’t been as lucky.

How TS Has Affected Me

For me, the physical health effects of TS have been mild but significant. Other than my short stature (I am only 4’11”), not many were noticeable or bothersome in my childhood. Shortly after my diagnosis, I started GHT and continued it until about age 14 or 15.

At about 7 or 8, I developed another common TS trait–moles, or “nevi.”

As I grew older, they became more noticeable, causing me to sometimes struggle with my self-image. I try not to dwell on this and am learning to think of my moles as part of what makes me unique. My husband doesn’t seem to mind these “beauty marks,” as he calls them. Now that I am an adult, I have been very diligent in going to the dermatologist yearly to get them checked and have had several removed.

At around 9 years old, I had surgery to correct another common TS trait–calcaneovalgus, or flat feet. After the surgery, I had to undergo several months of physical therapy to be able to walk normally again. I also have mild scoliosis in my spine and had other back issues that grew more noticeable as I got older, like bad posture. Through the years, I’ve done physical therapy and chiropractic treatments. to help these issues.

My posture and other aspects of my physical appearance caused me to be bullied at school as a preteen and teenager. This negatively impacted my confidence and self-esteem. However, my faith, as well as my husband’s and family’s support, helped me see my inner beauty and believe in myself.

Besides what I mentioned above, I also have osteopenia (mild osteoporosis), chronic fatigue, vitamin D deficiency, hearing loss, and uterine fibroids and cysts. Additionally, I have a congenital cyst, or a malformation in my brain’s corpus callosum. This is the area between brain’s the left and right hemispheres, where communication between the two occurs. The doctors are not sure whether this might be related to TS.

My Biggest Challenges

Due to the uterine fibroids and cysts, in 2017, my gynecologist and I decided it would be best for me to have a hysterectomy. By the time I had this procedure, my husband and I came to terms with my infertility. We make the best of our situation and focus on each other as well as our families, and two dogs. We’re blessed to have three beautiful nieces and four handsome nephews in my husband’s family.

However, I still sometimes struggle with the disappointment and sadness over being unable to give my husband a child. Currently, we’re not in a position financially and lifestyle-wise to adopt. We just hold on to faith that if it’s meant to happen, it will.

I believe that parents, caretakers, and doctors of individuals with TS should be better equipped on how and when to best approach the infertility conversation with them. Because it’s a sensitive topic, it should be done in an honest yet tactful way. The unique situation and personal background of each patient should also be taken into account.

As unconditional and big as my parents’ love and support was, they didn’t really have a comprehensive conversation with me about this. I was about 22 and already dating my husband before I fully understood the effects of TS on my fertility. My endocrinologist explained it to me on one of the last appointments I went to with my father before I graduated from college and moved out.

I don’t think the topic had even come up during previous appointments. All I knew up to that point is what my mother told me as a teenager–that I may need “help” having children.

Parents, caretakers, and medical professionals dealing with individuals with TS, please put aside any fears, awkwardness, and/or cultural taboos that may impede you from talking about infertility. This includes especially the cultural taboos that are still prevalent in Latin American cultures and in U.S. culture, to an extent. This will empower and prepare your “butterflies” for when the time comes for them to discuss it with their partners. It will also be helpful to them in deciding the best option for their situation, when and if they choose to start a family of their own.

For me, the cognitive and psycho-motor challenges associated with TS are even more difficult to cope with than infertility and most of the physical effects. I’ve always struggled with slow processing speed, time management, focusing, executive function, and spatial awareness. Also, I get overwhelmed and flustered easily, but not to the point that I lose composure or require medication.

These issues have created difficulties with managing and completing even simple tasks, especially in situations with a strict time limit or that require multitasking. Unfortunately, because of my poor coordination and visuospatial skills, I have been unable to drive and ride a bike. My husband and his family help drive me, which is challenging at times.

Just a few years ago, I discovered that I have NVLD (nonverbal learning disorder) through TSF’s helpful articles and an NIH study I participated in in 2016. I still don’t have an official diagnosis, though.

NVLD is commonly linked to TS, and I encourage caretakers to learn more about it. Evaluating a child soon after noticing signs of NVLD will give them a better chance at receiving the accommodations and treatments they need. Sadly, neither my parents nor my doctors were aware of the cognitive effects of TS.

Giving Back to Others

With the help of my family, friends and teachers, I successfully overcame most of my major challenges during high school and college. I learned to compensate for my weaknesses by focusing on my strengths. I’ve always had great verbal skills and a talent for subjects dealing with languages and humanities. This led me to completing a bachelor’s degree in international studies and history at Saint Louis University in 2003. Then, in 2006, I earned a graduate degree in international affairs at Washington University. Lastly, in 2010, I earned an online Spanish-to-English, English-to-Spanish translation certificate from Adelphi University.

As an interpreter, I’m grateful to have opportunities to help parents like mine. I believe that, especially in communities with larger Latino and other immigrant populations, it’s important to establish networks of doctors fluent in Spanish and other languages. It’s also critical to make medical interpretation and translation services more accessible to these communities. This would greatly improve these patients’ quality of care.

Finding Support in the TS Community

Through its website and social media, TSF has provided a forum for so many people affected by TS to connect with others like themselves. We can offer support to each other for our challenges, encourage each other, and exchange information, all while forging new friendships in the process. It’s imperative that everyone affected by TS–from parents of babies diagnosed in utero or at birth, to adults with TS–feel like they have someone to turn to for support. The TSF community has helped meet this important need.

Also, TSF has been instrumental in partnering with medical professionals, encouraging more TS research, and educating people about TS. Research leads to timely diagnosis, and it’s essential in developing treatments tailored to TS patients’ specific needs. This can improve or even save the lives of individuals with TS.

Since my diagnosis 30 years ago, research and education about TS has come a long way. However, we still need to fully understand many related conditions, like NVLD. In the future, I hope that more medical professionals will partner with TS organizations like TSF to continue furthering research. If you are someone with TS, I encourage you to participate in research opportunities like I did in 2016. TSF’s new initiative, TSRX-PIN, is a great place to start. Remember–we can all help to raise awareness in some way!

Making a Difference in the TS Community

Like many others who have used TSF’s website, I’ve shared the TS Patient Care Guidelines with my doctor. Although I’ve only accessed TSF’s resources in English, I’ve been blessed with the opportunity to do volunteer work for TSF by translating some of these resources into Spanish (see below). I learned a great deal in the process. It was also very gratifying to know that I helped to give Spanish-speaking communities access to this valuable information in their native language. Through its website and social media, TSF has provided a forum for so many people affected by TS to connect with others like themselves. We can offer support to each other through our challenges, encourage each other, and exchange information, all while forging new friendships in the process. It’s imperative that no one affected by TS–from parents of babies diagnosed in utero or at birth, to adults with TS–feel like they have no one to turn to for support.

The TSF community has helped meet this important need. Furthermore, TSF has been instrumental in partnering with medical professionals, encouraging more TS research and education about TS. Research leads to timely diagnosis, and it’s essential in developing treatments tailored to TS patients’ specific needs. This not only improves many of the TS community’s lives, but can also save their lives.

Since my diagnosis 30 years ago, research and education on TS has come a long way. However, we still need to fully understand many of TS’s aspects like NVLD. In the future, I hope that more medical professionals will partner with TS organizations like TSF to continue furthering research. If you are someone with TS, I implore you-participate in research opportunities like I did in 2016. TSF’s new initiative, TSRX-PIN, is a great place to start. Remember–we can all help raise awareness in some way!

Written by Angela, a woman from Colombia living with TS, and edited by Susan Herman, TSF volunteer lead blog editor.