The name, ThyroidChange, resonates with me. I think about my own journey with thyroid disorders, and my family’s journey with thyroid disorders. You see, I was diagnosed in my twenties with hypothyroidism. I had been trying (unsuccessfully) to conceive. Eventually, I was tested for hypothyroidism. Once my thyroid levels were normal, I was able to conceive my first child. Shortly before my oldest son was born, my husband was diagnosed with Graves’ disease (autoimmune hyperthyroidism). Two weeks after my oldest son was born, he was diagnosed with congenital hypothyroidism. My youngest son was also diagnosed with congenital hypothyroidism. A few years ago, I was told that I had Hashimoto’s (the autoimmune version of hypothyroidism). So, there you have it: my entire family has thyroid problems. The 3 people that I love the most in the world have thyroid disorders. My life revolves around visits to labs and endocrinologist offices and thyroid medication. That’s the short version of why I care about thyroid disorders. You may wonder, though, why I decided to blog and to add my voice to the growing list of thyroid advocates.
It’s sort of a long story, beginning of course with my family. Over time, I became known among friends and family as the “Thyroid Mom” because I was always talking about thyroid related issues and urging people to get their thyroid levels checked. Even one of our physicians said, “oh, yeah, I remember you, you are the one with the kids with congenital hypothyroidism …you’re the ‘Thyroid Mom’”. When my oldest son was born, though, social media wasn’t as popular or accessible as it is now. There was no easy way for me to connect with other people whose children had congenital hypothyroidism. There were very few resources available for me aside from endocrinology journal articles that I found online.
I stumbled upon the MAGIC Foundation website. The MAGIC Foundation is a nonprofit that raises awareness about growth-related disorders in children, including thyroid disorders. Over time, I began volunteering with MAGIC. I field calls and emails from parents around the world who have children with congenital hypothyroidism (and other thyroid disorders) and moderate a list serve for them. I realized that I was able to help other parents not feel as alone as I did during that first year of my first son’s life. My friends and family urged me to share my experiences and my stories publicly. This was a tough call for me since it involves personal details about my life and my children’s lives. However, it began to nag at me in a way that was similar to hunger pains that just wouldn’t go away. One day, I received an email from a woman that I had been helping via email. She and I had exchanged numerous emails at all times of the day and night regarding questions and concerns she had about her daughter’s diagnosis of congenital hypothyroidism. It had been a month since our last email, and she was writing to tell me that my emails to her in the early days after her daughter was diagnosed with congenital hypothyroidism had pulled her from the despair of postpartum depression. Something changed for me that day. I knew it was time. I had purchased the domain name for Thyroid Mom a few years prior, but knew it was time to actually use it.
One year ago, I launched my blog, Thyroid Mom. Since then, I have received countless emails and messages with comments about how my stories have helped them. One mom wrote to me after sharing a blog I wrote with my son: “Thank you! I worry so much about what is in store for my 18-month-old daughter and your beautiful son has helped me today beyond words. I’ll calm down now. Bless your wonderful family!”
Comments like that help me remember that I’m on the correct path and am answering my call. I still struggle from time to time … wondering if this is worth all the time and energy. I wonder if being so open about our health is the right thing to do. But, I think about my children and how lucky I am that they have access to newborn screening, thyroid medication and good doctors. I think about how many children still do not have those same things. Then, I begin to reflect on the mission of Thyroid Change: working to educate patients and medical professionals regarding innovative diagnostics and individualized treatment options available for thyroid hormone assessment and replacement. My husband asked me recently what my dreams were. Here are the things that immediately came to my mind:
1) To raise awareness about congenital hypothyroidism so that no parent or child feels that they must endure this journey alone.
2) Newborn screening for ALL children in the world so that no more parents have to endure the pain of knowing that their child could have been saved by a heel prick (and improved standards on existing newborn screens to be sure we catch all children).
3) Use of blood spots for drug titration not just for screening (and access to this for all children), therefore reducing the pain that children experience with multiple blood draws.
4) Stable liquid forms of thyroid medication for use with infants, so that parents aren’t struggling with how to administer medication that comes in pill form to newborns.
5) More research and more answers to all of our questions, leading to overall improved care of children with congenital hypothyroidism.
Thanks to ThyroidChange, I feel emboldened to dream big, not just for my own children, but for all children with thyroid disorders. Who better to fight for change for than our children?