Romans 5:3-5

"We can rejoice, too, when we run into problems or trials, for we know they help us develop endurance. And endurance develops strength of character and character strengthens our confident hope of salvation. And this hope will not lead to disapointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love." Romans 5:3-5



Monday 6 June 2011

Conference

Dear Friends and Family,                                                                          June 5, 2011
We are flying home and my brain is full of information.  We took pages and pages of notes and had the opportunity to talk face to face with the Doctors and researchers who study and treat Hypoparathyroidism.  We also were able to meet and visit with other people who have this disorder.
I will share some of what we learnt:
We have been trying to figure out just how “rare” Zach’s condition is.  Well, it’s hard for them to speculate because most Doctors in the world don’t even know what it is or how to test for it.  A safe guess in Zach’s case is 1 in a million.  Unreal.....
We also found out why there will never be a home blood test for Zach to check his calcium levels and why we have to go to the Stollery to do the test.  The test has to be done in a lab because it requires the use of radioactive material (not just any lab can test it).  Can’t you just see all the Klassen kids glowing in the dark.......LOL!!!!!
Hypoparathyroidism is the most difficult Endocrine disorder to treat.  It is an unpredictable disorder.
 PTH is the hormone excreted by your Para glands.  Zach’s do not work.  The lack of this hormone has a direct impacted on your bones, your GI system and your kidneys.
The number one question in our minds since Zach was diagnosed with this disorder is “why”?  At the conference there were about 40 to 50 people.  Most of those in attendance have Hypopara due to the removal of their Thyroid and the Para glands were taken out in the process.   We met a girl from Iceland who has been in a research program at The National Institute of Health since she was 6 years old.  She has been receiving PTH injections for 17 years.  She is beautiful.  She is in University.  She was the first child to be treated with PTH.  It was amazing to see her with our own eyes.
Zach’s current treatment address’s the lack of calcium in his body by giving him loads of Vitamin D.  However, it doesn’t address the real issue.....the lack of PTH in his system.
Thank you to all of you for your prayers and support.  God has provided for us in ways we could not have imagined.  We will keep you up to date with what is going on.
Love, P and T

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