Well after good intentions of starting this blog YEARS ago....life got in the way....2 kids got married....4 grandkids....just stuff! But now- I finally am going to make an honest effort to stay on top of this.
Well... for the past few weeks I have been getting frequent calls from Moms all over the country with the same or very similar problems....Their now grown child...who was on growth hormone therapy as a child...is now experiencing more medical issues and they need help.
Why are they calling me?
My name is Jamie Harvey and I am a co-founder of a children's charity called The MAGIC Foundation. (http://www.magicfoundation.org/). My daughter was one of the first on the bio-identical growth hormone (not a generic) from 1986-1997 (she started at age 5 and stopped at age 16). (You can read about the early days in the post from 2007 archives on this BLOG.)
Over these many years, people have heard me talk (or read my early story online) about problems in this journey of medical "new-ness". And because there is so very little information "out there"- desperate parents are tracking me down for answers.
I need to make it clear that I am not a medical professional of any sort. I am just a mom (and now a grand-mom...lovin it!) who has been at this a long...LONG time. I decided to put all of this together so that families have some information to consider during their quest for answers.
This process will take a while...so just hang in there with me!
In the early days....when we finally got my daughter diagnosed as being growth hormone deficient and on medical treatments as a child...things were great and we thought that was the end of the problem....unfortunately it was not. Growth hormone deficiency can last a lifetime and we did not know that....way back when....and we found out the hard way! It took 12 long, agonizing years to learn about the issue of growth hormone after the growing years.
And because I know this can be boring...I am going to tell you WHY this is important ...
During the 12 years (after my daughter stopped her GH treatments)...she:
1. Developed an irregular heart beat
2. Gained lots of weight
3. Went on anti-depression med's
4. Struggled to get out of bed regularly
5. Began to have a thinning of her hair
6. Was diagnosed with Hashimoto's thyroiditis (hard to control thyroid)
7. And she began to loose her vision! Meaning she was getting close to legally blind WITH glasses on.
I will go into these issues and more in the upcoming days....
Labels: magic foundation;growth hormone deficiency