We Need Your Hemochromatosis Story For Awareness Campaign!

Please, don’t make us beg… O.K. this is us begging... we need your help –   consider this a formal request from ironitout.org  – let your story be told and help us save lives! we_need_your_help_blog_big

We need you personal story, the story of a family member, friend or co-worker for our awareness campaign! If you’ve been touched by iron overload, here’s your chance to get involved.

Not sure how to do this? Here are a few options:

*Make a 1 min video clip with your smartphone, iPad, computer, then upload it to youtube  or the group fb page and send us the link. Get a family member or friend to help shoot it.

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Tell me your story, I’m begging you.

*Write up your story and send it to mtcowboy@teleport.com or info@ironitout.org  If possible Include photos and images and we will turn your story into a 1 min. video clip and written posts – just tell your story from the heart – who you/they are, hobbies, career, family – what they love and do and how they were diagnosed, misdiagnosed, not diagnosed, illnesses. etc.  If you have video of yourself or the person in the story doing something in life include that and we’ll edit it into the video clip.

If you think the other person will step up, you’re wrong. We need you to tell your story.

Go to ironitout.org or post in the group or post it to youtube and let us know the link or where it’s been posted. or simply send your write to mtcowboy@teleport.com

Note: This is NOT a commercial project. We are a nonprofit organization and the video clips and stories and images will be used for an awareness campaign not commercialized in any way.

Thank you in advance for telling your story. It will save lives.

 

 

 

 

3 thoughts on “We Need Your Hemochromatosis Story For Awareness Campaign!

  1. I would like to share my story. I am 29 and diagnosed 2 years ago with HH. I am a homozygote of the c282y gene. I was misdiagnosed for 5 years or possibly longer. I was diagnosed depressed, I was told I should be happy I had a high iron count. I was thought to possibly have leukemia and also told that I could be having elevated liver enzymes from drinking(I don’t drink regularly) and I should stop getting tattoos because they could be giving me high ferritin. My iron was 580 and say was 85%, upon a fluke diagnosis from an on call doc after a spinal tap went wrong. I have lost my mother 48 to several cancers, my grandma a year before my mother 65 whom had several different cancers, my uncle 50 who had cancer and my moms dad at 42 with throat cancer, and my father has a hepatic liver, bronzing and diabetes. I am THE FIRST AND ONLY ONE DIAGNOSED IN MY FAMILY. It was like pulling teeth to have them treat me because I am a woman and my doctor at the time says we don’t treat woman usually let alone a woman with low ferritin, he wanted me to wait till I was at 1,000…. This is just the tip of the iceberg.

    • Amber – Thanks for sharing your story. We would love to feature it on the site and through social media. I will email you directly.

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