I Learned to Overcome Challenges to Better Focus on My Strenghts - by Angela Fehn

Hi, my name is Angela, and I wanted to share My TS Story for Turner Syndrome Awareness Month. I was Born in Bogota, Colombia, South America. At age 10, I was diagnosed with classic Turner syndrome (TS). I moved to the US with my dad, his wife (who has been like a second mom), and my brother, when I was 12.

During my third year of college, in February 2002, I met my loving husband. We have been happily married for 16 years and live in Festus, Missouri. I am 41 years old, and I work from home as a Spanish-to-English and English-to-Spanish interpreter. I enjoy spending time with my husband and my dogs, talking to my family who are abroad and out of state on the phone. I also like listening to music, reading, watching movies, shopping, and decorating. When able, I love travelling or going on outings and walks on my time off.

I feel very passionate about helping spread awareness about Turner syndrome (TS) because so many in the medical field, educators, and parents are still not familiar with it. It breaks my heart to know that so many girls and women with TS are not receiving the proper care and support they need because of this. Consequently, many people with TS have to struggle with the effects of it, feeling alone and not understanding the reasons behind what is happening to them; or, if anything can be done to improve their quality of life. It is my hope that by continuing to share my story, and by continuing to volunteer for TS support organizations, I can do my part in changing this.

Here’s some specifics on my personal experience with TS.

DIAGNOSIS: I remember it was my mom that told me of the diagnosis once she received the karyotype results. She was a cardiologist, and lovingly explained that this tiny cell had “missed the bus,” so I could better understand it. I don’t remember too much about the circumstances that had led my parents to get me tested. I know they definitely noticed anomalies in my growth and development. There were several doctor visits before it was decided that a karyotype had to be done. Shortly after the diagnosis, I was referred to an endocrinologist. I had an unpleasant visit with the first endocrinologist I saw, due to her lack of tactfulness in explaining some things. My parents decided to switch me to another doctor right away.

I feel fortunate that, aside from being a little scared after that first endocrinologist visit, the diagnosis process itself was not too stressful or complicated for me. This was, in part, because I was still too young to be fully aware of all the implications and effects of Turner syndrome. It was also because I had loving, supportive parents. My mother’s work made it possible for me to get my growth hormone for free. Even after we came to the US, she always made sure to be up to date with what happened during my appointments and was always available to consult with and lend her unconditional support. My father was the one that got me established with the endocrinologist and other doctors after we moved to this country. We were fortunate that we were referred to an endocrinologist who spoke Spanish.

HOW TS HAS AFFECTED ME. For me, the effects of TS have been relatively mild, but still significant. Other than my short stature (I am only 4’10”), not many were noticeable or bothersome in my childhood. I did start growth hormone treatment with Genotropin, shortly after being diagnosed, and was on it until about age 14 or 15. At about 7 or 8, I started developing several moles/nevi , another common trait with TS. As I grew older, they became more noticeable, causing me to sometimes struggle with my self-image. However, I try not to dwell on this, and I 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. I have had several removed as a precaution or because they were bothersome.

Other aspects of my physical appearance related to TS that I have been self-conscious about, but have learned to accept are slightly droopy eyelids (specially on the right eye), and the size of my feet not being in proportion with the rest of my body (I wear a size 9 and a half shoes). When I was 9 years old, I had surgery to correct calcaneovalgus (flat feet), which is also more common in TS. I have mild scoliosis in my thoracic spine as well. After the foot surgery, I had to undergo several months of physical therapy to regain my ability to walk normally. Partly because of scoliosis, I also have bad posture and back pain issues , which became more bothersome as I got older. I have had to do physical therapy and chiropractic treatments for this several times over the years. My bad posture, along with other aspects of my physical appearance and my social awkwardness, led to me being bullied and made fun of at school during my preteen and teenage years. This had a negative impact on my confidence and self-esteem.

However, my faith, as well as the love and support of my husband and family, helped me to see the beauty within myself; to believe in myself more. As a young adult, starting around my early twenties, I had to try several types of hormone replacement therapies to try to keep my cycles regular. Some worked better than others, but, overall, none of them corrected my breakthrough bleeding long term. I ended up developing fibroids and cysts in my uterus. In 2017, my gynecologist and I decided it would be best for me to have a hysterectomy. Besides what I mentioned above, I had osteopenia as a young adult as well. Though I'm still being monitored periodically for it, the scans have been normal for the past few years, and I have not had to go back on the medication for it.

More recently, I have been dealing with chronic fatigue that presents with mild aches and pains; vitamin D deficiency (intermittent); hearing loss, as well very mild lymphedema in my fingers and legs. Bloodwork was done to try to determine the cause of the fatigue and myalgias. Thankfully, those tests came back normal, and several autoimmune diseases were ruled out. The hearing issue did not develop to a significant stage until about 2 and a half years ago. I was fortunate not to have had recurrent ear infections during my childhood. I currently use hearing aids, which I was fortunate to obtain through an awesome organization called The Hearing Aid Project.

Additionally, I have a congenital cyst or malformation in the corpus callosum of my brain. This is the area between the brain’s left and right hemispheres, where communication between the two occurs. It was diagnosed during a study on TS that I participated in at the National Institute of Health (NIH) facilities in Washington, DC back in 2016. The doctors are not sure whether this might be related to TS, but it is being monitored by a neurologist. Apart from the TS related issues I have already mentioned, some chronic sinus issues, GI issues (GERD and irritable bowel), and some moderate arthritis, I have otherwise been blessed with good health. I have not had any of the thyroid or heart issues that are common with TS. I will continue to have regular screenings for this and other issues that may arise with TS.

MY BIGGEST CHALLENGES: By the time I had my hysterectomy, my husband and I had already come to terms with my infertility. We make the best of our situation and focus on each other, our families, and our 2 dogs. We’re blessed to have three beautiful nieces and four handsome nephews in my husband’s family that we get to spend time with. However, I still struggle sometimes with feelings of disappointment and sadness over not being able to give my husband a child. We are not currently in a position financially and in the overall logistics of our lifestyle to adopt. We just hold on to faith that if it’s meant to happen, it will.

Regrettably, I did not become aware of the full effects of TS on fertility until I was about 22 and already dating my husband. As unconditional and big as my parents’ love and support was, they didn’t really have a comprehensive conversation with me about this. I don’t recall the topic even being brought up during my yearly endocrinologist appointments. It was not explained to me until the last of these visits that I had, right before I moved permanently away from home to finish college and start a life together with my fiancée (now husband). All I knew up to that point is what my mother told me as a teenager: that I may need “help” having children. I definitely would have felt more empowered and better prepared in having the initial conversation about infertility with my husband, and in then making the best decisions for our situation in that regard, if I had had the necessary knowledge about it earlier on. This is why I would urge parents, caretakers, and medical professionals dealing with individuals with TS, to put aside any fears, awkwardness, and/or cultural taboos that may impede them from talking about infertility.

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 have always struggled with slow processing speed, time management and planning, focus, poor executive function, as well as spatial awareness deficits. I also get easily overwhelmed and flustered, though not to the point where I lose composure or require medication. These issues have caused me difficulties with managing and completing tasks, even simple ones; especially in situations where there is a strict deadline, or that require multitasking. Unfortunately, I have not been able to succeed in driving and riding a bike because of my poor coordination and visuospatial perception deficits. I depend on my husband and his family to drive me, which is challenging at times.

I learned just a few years ago by reading some helpful articles and through the study at the NIH, that what I have just described are classic signs of NVLD (nonverbal learning disorder). I have not been officially diagnosed with it, though. NVLD is commonly linked to TS, and I encourage parents, caretakers, and medical professionals dealing with individuals with TS 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 to succeed. Sadly, neither my parents nor my doctors were aware of the cognitive effects of TS. I recall my father asking our doctor as to why I was slow at doing things, and he just responded that it was just an issue within my personality. By the time I became fully aware that my issues with this were at least in part related to TS, I had already been in the workforce for years.

OVERCOMING CHALLENGES AND GIVING BACK TO OTHERS: With the help of my family, friends and teachers, I successfully overcame most of my major challenges during 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. I pursued my interest in these and went on to complete a bachelor’s degree in international studies and history at Saint Louis University in 2003, graduating cum laude. Then, in 2006, I earned a graduate certificate in international affairs at Washington University. Lastly, in 2010, I earned an online Spanish-to-English, English-to-Spanish translation certificate from Adelphi University. After I completed my bachelor’s degree, I continued working for several years in a call center, where my husband also works. During that time, I was not able to find other employment opportunities from home, or that I could easily get reliable transportation to. While working at the call center, I was able to use and enhance my verbal skills, while interacting with people from a diversity of cultural backgrounds and business industries. I did not realize it at the time, but God was using this experience to prepare me for the interpreting job that I have today. I interpret now for people in a much larger variety of backgrounds and industries, including medical staff, lawyers, judges, bankers, and insurance agents.

During the first several years of my call center career (2002 until about 2014), I was able to manage my cognitive processing issues through accommodations and other work arounds. There were tough times, but there were also some great achievements, even a couple of promotions. I was fortunate that, for the most part, members of management were understanding and willing to help in any way that they could. For many years, they were even willing to mirror my work schedule to my husband’s, so that transportation issues would not affect my attendance. I also met some great people and made friends while working there. However, over time, the call average handling time requirements, as well as other demands of the job, became stricter due to changes in client programs and other factors. I found myself struggling more and more to keep up and, eventually, struggling to keep my employment.

The years 2015 and most of 2016 were a tough journey, reassessing and finding the right job for me. I started working with a great local agency that helps find adequate job placement for people with disabilities called Next Step for Life. Thanks to them, I eventually found a local interpretation service agency called LAMP. I got my first professional experience as an interpreter there, handling some calls from home for one of the companies they contracted with. It was not a job with a fixed hourly pay, though, so I decided to take a second job as a part time cashier at Lowe’s to supplement my income.

Finally, in late October of 2016, I came across my current company, Language Line Solutions, on the internet, and decided to apply. It’s one of the best decisions I’ve made. I was hired in November of 2016 and have been working for them since. I have learned so much and enhanced my skills tremendously in my 5 years with the company. It's very gratifying to know that you’ve made a difference in someone’s day or helped change their situation for the better, simply by helping them communicate. I’ll be forever grateful for this opportunity. I’ve also been blessed with the opportunity to do volunteer work to translate resources about TS into Spanish. I learned a great deal in the process. I feel a great sense of gratification and accomplishment knowing that I helped to give Spanish-speaking communities access to this valuable information in their native language.

CONCLUSION: MY HOPES FOR THE IMPACT OF MY STORY: I hope my story encourages and inspires other girls and women with TS; that through it, they can see that their condition and the effects of it do not define them, or their worth as a person. I also hope that it encourages them to advocate for their health to ensure they are getting the proper care. Sharing The Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome available on the TSSUS website with your doctors is a great way to do so. I also hope my story shows others with TS the importance of seeking help and accommodations when they need them. Seeking help and accommodations does not mean weakness, or that we are letting our limitations get the best of us. It means that we understand them and are willing to learn how to overcome them (or at least work around them), so we can better focus on our strengths. I hope that reading about my journey shows others with TS that they are not alone in theirs.

I am so grateful for the forums that groups TSSUS provides for so many people affected by TS to connect with others like themselves. It is a great community where we can offer support and encouragement to each other through our challenges, inspire each other, as well as exchange information, all while forging new friendships in the process. Another reason why I would encourage others with TS to join these groups in the Turner community is to learn about research opportunities. Research is key to pave the way to ensure adequate care and to improve the quality of life for all TS patients! I would encourage others with TS to participate in research opportunities as much as they are able. Finally, I would like all my fellow “butterflies” to always remember how special and unique they are: we are the 2 percent that overcame the odds to be here, we were born overcomers! Happy Turner Syndrome Awareness Month and God bless you all butterfly sisters!