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As a growth hormone deficiency (GHD) parent, who fought for several years for my daughter’s diagnosis, my heart knows how this medical issue can change your entire family’s life. It is not as simple as it sounds.
I know from experience how very important it is to have someone to confide in about our unique life issues. Someone who is honest, understands my child’s medical needs (from experience) and someone who does not judge me! I needed a place where I could learn about everything at my own speed. A place where things could be explained in a way that I understood! I had to make sense out of all those fancy words and terms I was hearing, so that I could make good choices for one of the most important people in my life – my child.
What support is out there?
All around the world there are parents who have united to help each other. Some of us have official organisations recognised by a country government. Others have only private social media groups like Facebook. I strongly recommend that every parent at least join a social media support group. You don’t have to participate. You might simply want to read and learn from posted comments. But please join or flag a group. It will help you feel confident in your decisions and be the best possible parent for your special child.
ICOSEP (International Coalition of Organisations Supporting Endocrine Patients) has 2 pages of serious importance to you!
Parent Associations (listed by country): https://icosep.org/country-resources/
Medical Associations (listed by country): https://icosep.org/professional-organizations-and-medical-associations/
If we are missing any organisation, or if you build an association or social media group for families in your area, please let us know! We will be glad to assist and link to you – never any fees! The only way we can continue to be successful for growth children, is to unite!
Good Growth=Good Health. Join us on the 20th of September each year to keep educating the world about the real health importance of children’s growth. It is not cosmetic! It is about more than height; it is about life-long health.
Written by Jamie Harvey, CEO ICOSEP
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