Creatine Community Blog

14Sep 2018

Hello, my name is Chelsi and I have CTD. 23 years have come and gone before I even knew about this condition. If it wasn’t for my son I would have gone my whole life without any knowledge. When I first got diagnosed I was scared. What does this all mean? How are people going to react? Am I going to be treated differently? Life wasn’t always easy for me growing up. Making friends was a struggle. Communicating appropriately with someone was definitely a no go for me. Continue reading

11Sep 2018

On a balmy night in late July we flew into Austin for the first Cerebral Creatine Deficiencies Syndrome (CCDS) Scientific + Patient Symposium. It was the kind of midsummer night when everything is possible and magic is in the air. Except that instead of magic we had science and instead of mythical creatures we had another rare sort of encounter: a hotel packed with researchers, creatine experts, and CCDS families. We had high expectations, were a little nervous, and some of us way too excited for having seen airplanes (aka Ehy-paynes) up close. Little did we know how our expectations would be blown away and how this symposium would become the beacon of hope we’d been searching for in the past year. Continue reading

31Aug 2018

Levi smiling

Wow! I’m still processing all of the things I learned from the 2018 conference in Austin. The CCDS Symposium was incredible! For me, the information was invaluable and as a result, I feel more equipped going into doctor and therapy appointments. Even more amazing were the connections and networking that happened—as a result of the ACD bringing scientists, doctors, pharma companies, therapists, and families together. Continue reading

20Aug 2018

Good day friends! For this blog, I thought I would write about something I have been asked about several times, the feeding tube. It goes by many names, ranging from G-tube to Peg or Mic-key, but they all do pretty much the same thing, and in my opinion, that thing is to provide an amazing way to deliver nourishment to my boys. Now before I go further, I have to give the request warning that I am in no way, shape, or form a medical professional. I do not intend for this blog to convey medical advice or a course of treatment. Rather, I would like to tell everyone how we wound up being a “tubie” family, what benefits and challenges we have faced, and finally, I will add a little advice that I think would be helpful for everyone to know. Continue reading