Today is the last day of TS Awareness Month and I want to thank all of you who have come along for the journey. Today I’ll be talking about getting connected with your local TS Chapter as well as the national and global TS network and how significant it was for both me and my parents growing up. Living with a rare condition can be hard as you often feel like you don’t fit in and no one understands what you are going through. Many parents can also feel lost as to how to help their child cope with the challenges that their diagnoses presents. As a kid, connecting with my local TS Chapter and att ..read more

If you’ve been a regular follower of my blog then you know that I talk a lot about my experience with the autoimmune condition Crohn’s disease. However, Inflammatory Bowel Disease is only one of the many autoimmune diseases that girls with TS are at an increased risk for. Others include autoimmune disease of the liver, hypothyroidism and Hashimoto’s thyroiditis, diabetes, celiac, arthritis, pernicious anemia, thrombocytopenia, psoriasis, and Addison’s disease. Doctors have found that girls with TS have an increased level of antibodies compared to the general population which is likely the con ..read more

One of the most obvious signs of Turner Syndrome is a decreased rate of growth due to a lack of response to the body’s natural production of growth hormone. The average final height of girls with TS without growth hormone supplementation is around 4’6-4’8 which is why it is technically considered a form of proportionate dwarfism according to the Little People of America website. Depending on the age of diagnoses, growth hormone treatment can begin anywhere from the age of 4-12 and is given in the form of an injection but is usually stopped by age 13 or 14 so that estrogen replacement therapy ..read more

Did you know that February is not only Turner Syndrome Awareness Month but also Heart Month at BC Children’s and other hospitals around the world? This is quite fitting because many girls with TS also deal with heart defects such as a bicuspid aortic valve, coarctation (narrowing) of the aorta, and aortic dissection or splitting/tearing of the aorta. They can also have high blood pressure, high cholesterol, and chest wall deformities such as pectus excavatum in which the sternum and sometimes the ribs are inverted which, if bad enough, can impact the heart and lungs. Many of these congenital ..read more

Among the many health problems that can come with Turner Syndrome is hearing loss, for which there are many reasons. Girls with TS, myself included, tend to have lower-set ears and a wider, shorter ear canal. This leads to frequent ear infections during childhood and into adolescence as well as fluid build up in the middle ear which can result in perforation of the tympanic membrane, aka the eardrum, and lead to conductive hearing loss. Girls with TS can also experience what is called sensorineural hearing loss which happens when there are problems with the inner ear. This type of hearing los ..read more

I’m sure that all of you have heard of learning disabilities such as dyslexia, ADD, and ADHD but one that you may not be so familiar with is Non-Verbal Learning Disorder or NVLD. This is the learning disability most common in girls with Turner Syndrome. Unlike other learning disabilities, those of us with NVLD tend to have a large vocabulary, strong language skills, excellent rote memory, and excel at reading. Like all disabilities, each person will be affected differently and to a varying degree, but this article https://childmind.org/article/what-is-non-verbal-learning-disorder/ outlines nic ..read more

Today I’ll be talking about the part of Turner Syndrome that has probably affected me, at least emotionally, the most: Premature Ovarian Failure, subsequent HRT (Hormone Replacement Therapy), and its impact on Psychosocial Development in girls with Turner Syndrome. As I said in my last post, Turner Syndrome results in either the complete or partial deletion of all or part of the second sex chromosome and this often leads to Premature Ovarian Failure depending on the person’s karyotype. Because I have the classic karyotype, 45X0, Premature Ovarian Failure was kind of a given and I was started ..read more

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.” Psalm 139:13-16 February is Turner Syndrome Awareness Month and throughout the month I will be highlighting different aspects of this unique genetic condition. I thought I w ..read more

One of the biggest struggles for those of us living with Crohn’s and Colitis is our relationship with food. I would like to preface this post by saying that there is a lot of debate amongst medical professionals as to whether diet plays a role in IBD or not and so a lot of GIs are hesitant to even talk about it aside from advising staying away from lots of fibre while in a flare. There are lots of diets that show promise such as the Mediterranean, SCD, Paleo, low FODMAP, GAPS and Crohn’s Disease Exclusion diets but everyone’s body is different and unfortunately there is no one size fits all ..read more

November is Crohn’s and Colitis Awareness Month in Canada and I thought I would start off my telling my diagnosis story. My journey with IBD started in Grade 11/12 (although I didn’t know it at the time). My earliest symptoms were food aversions, early satiety, random fevers, and random bouts of cramping and loose stools. These symptoms came and went and at the beginning were fairly spread apart so I didn’t think much of them. What is interesting to note is that these symptoms started after I started hormone replacement therapy (aka birth control) for my Turner Syndrome. After I was diagnosed ..read more