Turner syndrome – Life with Charli

Living with Turner Syndrome and Disability

Did you know that February is Turner Syndrome Awareness Month? Since we’re in March now, I’m late to helping spread awareness, but better late than never as is always said! Also, any time is a good time to spread awareness! I’ve talked a lot about my experience with Turner syndrome on this blog, and I wanted to share a little more in this latest post. I haven’t talked much about this on my blog, but I receive disability benefits. It was not easy to prove that I really needed the benefits, as my disability is invisible. I was diagnosed with Turner syndrome at around 13 years of age. Turner syndrome can cause a lot of complications. One of those complications are learning difficulties, which I have.

Even before I was diagnosed with Turner syndrome, my parents and teachers noticed I was struggling to keep up with my peers. This made school and many everyday activities difficult for me. My father wrote a heartfelt letter detailing his experience raising me and my day to day struggles. He sent it to the court handling my case for disability benefits, and the court clerk read it. The clerk cried and suggested the judge read the letter too. The judge did read the letter and ruled in favor of my father and I. This was just the first of several hills to climb in my adulthood concerning help with my disability.

Recently, my father found the letter he wrote, and I read it over. It was very interesting reading about my day to day struggles through my father’s perspective. To most people meeting me, I might not appear to have any disabilities, especially if they just spend a few minutes with me. However, to my father and those who know me well, my disabilities are striking. Also, Turner syndrome and the complications connected to the disorder are not well known, so those assessing the need for disability benefits had a difficult time understanding why I need them.

Turner syndrome affects those with the condition differently, so it’s important to clarify that the condition does not always lead to disability. Many women lead typical lives. However, for those like me who do develop difficulties, it is important for them to feel supported. I started my blog for this reason. For a long time after I was diagnosed with TS, I didn’t want tell anyone about my condition. I only told a few people and kept many others at arms length. As time rolled on and I struggled with getting disability benefits, I knew I could no longer keep my condition to myself. I knew I had to share my experiences. My hope is other girls and women with TS feel understood.

There is nothing wrong with living with a disability. Sometimes it can be a different and beautiful way of experiencing the world. However, it is important to remember that not all disabilities are easily visible, and people with disabilities can live typical lives with a little support.

My Interview with Butterfly Banter

Hello everyone! Welcome back to my blog! For those who are familiar with my blog, you know I have a condition called Turner Syndrome. Turner syndrome is when a woman is born with one of her X chromosomes fully or partially missing. Only about 1 to 3 percent of pregnancies involving a baby with Turner syndrome make it to term. The other close to 99 percent usually end in miscarriage. Around 15 percent of all miscarriages were the result of Turner syndrome.

Turner syndrome can lead to a lot of complications for those babies who survive, and the complications can vary from person to person. I recently talked about my experience with Turner syndrome on a podcast called Butterfly Banter. Did you know that Turner syndrome is represented by the butterfly and those with Turner syndrome are called butterflies? That inspired the name for the podcast. It is hosted by fellow butterfly Jenna Haller. The podcast is dedicated to raising awareness on Turner syndrome through those of us with Turner syndrome telling our stories.

I admire Jenna’s advocacy, and I was proud to tell me story on Butterfly Banter. If you would like to listen in on my conversation with Jenna, you can click here. I hope you enjoy the discussion as much as I did! Be sure to give a listen to other episodes on Jenna’s podcast as well, and follow Butterfly Banter on Facebook!

Thankyou for visiting and your support! Until next time!

Charli 🦋

My Interview with Pooja G

Hi all! I recently did an interview with a fellow blogger! She interviewed me! Yay! This blogger is Pooja G! She writes about mental illness and travel. She has lived in different places, so she has experience with travel! She also often posts inspiring quotes. Pooja recently put out a post asking if fellow bloggers would like to be interviewed in order to help them grow their platform. Pooja was very engaging and such a patient and kind interviewer! I had fun talking with her!Definitely head over to her blog and give my interview a listen, and while you’re there, checkout other posts by Pooja! Also follow her socials!

Blog

Blogger Interview With Charli

Twitter

https://twitter.com/poojagudka?s=21&t=XWWMlulxPnSE_-uSnLo1Bw

Instagram

https://www.instagram.com/herbivoreonajourney/

https://pin.it/47s0pn1wf

Facebook

https://www.facebook.com/pooja.gudka.79

See you in one year

Hi! It’s been a while since posted! For those who are not familiar with me, my name is Charli! I have a condition called Turner Syndrome. It is when I girl is born with one of her X chromosomes missing. Turner syndrome can lead to a lot of complications. Some of those complications include heart defects, hearing loss, and weak bones. I have been seeing my endocrinologist every six months to make sure that my health is ok. I’ve had to have surgery on my thyroid gland. Recently, however, my doctor told me that I can now see her once every year. My health is looking really good. As long as I continue taking my medication as prescribed, and continue making decent life choices, I will continue to be in good health. I consider myself to be very fortunate, especially since, like I said previously, Turner syndrome can lead to a lot of complications. There is so much I am thankful for. Being alive in the first place is something to be grateful for, because 99 percent of pregnancies involving a fetus with Turner syndrome end in miscarriage. Life sometimes throws us curveballs and challenges, but always remember that you are a fighter.

Why is Healthcare so Expensive: Part Two

Picture taken from Pixabay

I recently watched a video by a popular YouTuber named Lauren who runs the channel Living well with Schizophrenia. On her channel, she talks about her experience living with Schizophrenia and Schizoaffective Disorder. In on particular video, Lauren talks about the cost of health care. She lives in Canada where the government is heavily involved in helping with healthcare, so she doesn’t pay a heavy amount for her medical care. However, she shared what she would be paying without help. I liked the idea, and thought I’d also give a little idea of how much my healthcare would cost me without help. You can see this video below:

As I’ve mentioned many times on my blog, I have medical condition called Turner Syndrome. I take several medications for the condition. I did a little digging, and without help, I could be spending a total of $83.00 a month for my medication.

Turner syndrome causes a lot of complications. The condition is when a woman is born with only one fully functioning X chromosome instead of the usual two. Due to this fact, the woman’s body can not create estrogen on its own. Estrogen helps to strengthen a woman’s bones. This is why some older women with low estrogen suffer from osteoporosis. Osteoporosis is a common problem in Turner syndrome patients. Other complications include heart, kidney, and thyroid problems, among others. Because of all of the complications, many procedures are regularly done in order to ensure the Turner Syndrome patient remains in good health. These priced urges can include an MRI, sonogram, blood tests, and a bone density scan, among others. All together, my procedures can cost around $1,500 every time they’re done.

I have also been pretty open on my blog about my struggles with mental illness. It is no secret that mental health services can be expensive. In my case, therapy sessions without help would cost me around $2,800 each week. That’s around 14,000 a month for therapy sessions! The medication I take for my mental illness can cost around $233.00 a month.

As you can see, healthcare is pretty expensive. I didn’t even include all of my doctor visits, including the my primary care provider and specialist visits. I also did not include transportation cost. I would definitely not be able to afford the medical care I get with the good insurance I have.

Turner Syndrome? What’s that?

What is Turner Syndrome? In this guest post, fellow blogger Seguilola Salami helps me share a little about what Turner Syndrome is and my experience with it in order to spread a little awareness. Thankyou Seguilola! You can read the guest post here. While there, be sure to also checkout other posts on Seguilola’s blog! If you are into books and love to read, her blog is for you! If you have small children and you are looking for books for them, checkout Seguilola’s blog! She has a lot of recommendations, and you’ll enjoy listening to her adorable daughter give reviews on children’s books and interview authors! Click here to checkout her blog! Enjoy!

Dealing with a Keloid

I have mentioned many times on my blog that I have a condition called Turner syndrome. In a recent post, I mentioned my condition eventually led to surgery. Turner syndrome can lead to a lot of complications. One of them is problems with the thyroid gland. That was an issue for me.

I recently had surgery because of issues with my thyroid gland. The surgery ended up leaving a small keloid. The suggestion was given on how to deal with a keloid was through a steroid injection. Cutting out the keloid would only cause a keloid to grow back. So I’ve been getting injections to lower the keloid for a while now.

The doctor has to put the needle right in the keloid, and yes, they hurt a lot. The first time is especially painful, because the keloid is tough. As you continue to get injections, the keloid softens and the injections become less painful. Even with the help I’m getting though, even the doctor admits there is only so much that can be done. I will still have a scar. That’s ok though, because my scar tells my story. So I’m not ashamed of it.

Turner Syndrome and Disability

So I’ve recently been denied a service for people with disabilities. This wouldn’t be the first time, but that doesn’t make this situation any less frustrating. I’ve mentioned on my blog before that I am a person with a disability. The problem is that my disability is very unclear. I have an invisible disability, and often others can’t understand what exactly is wrong with me. My physical and intellectual abilities seem to be very much intact. What could I possibly need with disability services, right? Sometimes I even question whether or not I am a person with a disability myself because of all the doubt around me. However, while people are deciding whether or not I am actually a person with a disability, my struggles are very much real, and I deal with them everyday.

I’ve talked about the condition that I have on my blog many times. I have a genetic disorder called Turner syndrome, and it’s the reason for my struggles. Having Turner syndrome does not automatically make a person disabled, however, it can lead to disability. Tuner syndrome can lead to many complications. One of those complications is learning disability. Unfortunately, this fact is not very well known, because Turner syndrome is not well known. Also, girls with Turner syndrome can lead normal lives with proper treatment. However, every girl with Turner syndrome’s experience is different, and some do struggle more than others.

Another issue is the type of disability that girls with Turner syndrome sometimes have. Turner syndrome can lead to nonverbal learning disability. This means they can have issues with visual-spatial skills. Unfortunately, nonverbal learning disability is still not recognized as an official disorder.

All of these combined issues make it hard for me to get the services I need. People simply don’t understand my struggles, and don’t understand why I need help. What is really needed is more awareness on both Turner syndrome and nonverbal learning disability. What is also very needed is an understanding that every person’s experience is different. Not every person with a disability has a disability that is obvious.

Is Turner Syndrome an Intersex Condition?

I have mentioned many times on my blog that I have Turner syndrome. Google “Intersex”, and you will see many websites list Turner syndrome as an intersex condition. However, there is a lot of debate on which conditions under the umbrella of Intersex are actually Intersex conditions. Intersex conditions have been a hot topic for a while now, so as someone with what is considered an intersex condition by some, I thought I’d add my two cents.

First thing first, what is “intersex”? The American Psychological Association describes intersex as “a variety of conditions that lead to atypical development of physical sex characteristics…These conditions can involve abnormalities of the external genitals, internal reproductive organs, sex chromosomes, or sex-related hormones”. The term “intersex” was coined in 1917 by German geneticist Richard Goldschmidt when he noticed the phenomenon in gypsy moths while studying them. “Intersex” started being used commonly as a term for humans with certain genetic conditions in 1993 due to a research article written by American biologist Anne Fausto-Sterling.

In her article, Fausto-Sterling states that approximately 1.7 percent babies born worldwide are intersex. American psychologist Leonard Sax responded that the number of people with intersex conditions is actually far lower than 1 percent, and shouldn’t include conditions like Turner syndrome where the person’s phenotype is clearly male or female (meaning the person looks like a typical male or female with the typical male or female genitalia). This is the reason for the intersex debate.

In 2006, the term “Disorders of sex development” was introduced in the medical world. Medical professionals believed the term was easier to define and explain than “Intersex”. However, there is a lot of controversy over this term. Many intersex advocates believe the “Disorders of sex development” does more harm. For instance, many intersex babies undergo surgeries, often unnecessary ones that can cause permanent damage, in order to make the bodies of these babies fit what society deems a typical male or female body. Changing “Intersex” to “Disorders of sex development” medicalizes the bodies of intersex people even more. However, using “Disorders of sex development” gives room for the inclusion of conditions like Turner syndrome, because pretty much all disorders that affect sex development are under that umbrella.

So is Turner syndrome an Intersex condition? That is still up for debate. In my humble opinion though, no, it is not. People with Turner syndrome are all women born with a genetic disorder. There is generally no ambiguity on whether someone with Turner syndrome is male or female, and sex ambiguity is included in being intersex. Turner syndrome does, however, cause sex development issues, like not being able to go through puberty without medical help, making it a clear disorder of sex development.

Hopefully this post has helped someone, and I’ll see you in the next one!

What is Turner Syndrome: Coping with a Chronic Condition

Picture taken from Unsplash

Hey everyone! February is Turner syndrome awareness month, and March is Women’s Month. I’ve shared a little bit about my experience with being a Woman with Turner Syndrome on this blog before, but for this post I thought I’d share a little more about my experience with the condition and how I cope with it. I hope it will be helpful to someone!

What is Turner Syndrome?

Chromosomes are one part of the body that determines sex. It is well known that a Y and X chromosome means a boy and two X chromosomes mean a girl. Turner Syndrome is when a girl is born with only one fully functioning X chromosome. The other X chromosome is either partially or fully missing. Without a second fully functioning X chromosome, a girl’s body is unable to produce the hormones she needs to develop normally.

This can lead to a lot of complications, because not only do these hormones help girls go through puberty, they are also needed for health, especially bone health. Due to the complication that can be present in Turner Syndrome, around 10 percent of all miscarriages are caused by the condition and 99 percent of fetuses with Turner Syndrome are miscarried. Some fetuses with Turner Syndrome who manage to make it to term get diagnosed at birth or even in the womb because of complications caused by the condition. I was diagnosed when I was a teenager. That is the time when many girls with Turner Syndrome are diagnosed, because that is around the time they should be going through puberty.

How I Manage my Condition

As previously mentioned, Turner Syndrome can lead to a lot of complications. In my case, two big issues are with my thyroid and my bones. Those issues have led to fatigue. I feel tired a lot. That has become an increasingly bad problem because of the responsibilities I have. Also, I’m a bit of a perfectionist, and I’m used to working hard. However, my issue with fatigue has been forcing me to pay more attention to my limitations. I’m learning to be ok with taking extra breaks and to feel comfortable with accepting help. Needing more rest or help does not mean I am weak or any less of a person.

Since I have a weak constitution, exercise is very important. This is an area I struggle with very much, but one activity I do enjoy that gets my blood pumping is dancing. Not only does music I love lift my spirits, it does the job of getting my body moving. I especially enjoy when I’m able to get a little alone time and I can just put my music on blast! By the time I’m done having fun, I feel like I’ve just finished a good workout!

How do you handle dealing with a chronic condition? Do you have Turner Syndrome too? Let me know in the comments and share any tips you might have!