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I am a histio warrior! #histioawareness Praying for Gracie
Stacey, thank you so much! I have a good family that is helping me every day. Most people have never heard of this, and so do not understand the condition. I am praying there is no other involvement. With RA also, it is so hard to tell which illness is kicking in. I really don't want a bone biopsy. My lung biopsy was horrible and took 4 months to diagnose. I was in Tampa and no one could figure out what it was. Took sending it to the Mayo Clinic took get a diagnosis. Prayers for everyone, especially the children. Can't imagine how they and their parents can get thru this.
Praying for more awareness and easier diagnosis for the many forms of this disease.
Carla, I don't blame you for not wanting the biopsy. I know Garin had a head, liver and bone marrow biopsy and none were pleasant. He still has a big "hole" in his stomach from the liver biopsy. I always have to warn other parents and school that he had all of these procedures because he looks like he has been through a war (which he was). Parents start getting concerned (and it happens) the people think they are being abused - especially with the skin involvement and brusing when platelets are low. There was a boy in FL who went to MN for his transplant. I believe he is doing well. I'm glad you have a supportive family. I think that really makes a big difference.
Jennifer and Carla, how are things going?
Stacey, still trying to get answers. Pulmonologists wants me to discuss with Rheumy, who wants me to discuss with Primary. They all want tests. I am now in process of trying to make sure they all have the same info. Going in circles. Will keep you posted.
My husband is a histio warrior! September is Histio awareness month. Wear blue to show your support. #histioawareness
Histio Warriors: The Documentary histiowarriors.mi...
Are you a Histio Warrior? #histiocytosis My Kadence is 3 1/2 years into her fight!
Never thought I'd have to deal with my husbands past but it has taught me to stand up for myself, what's right, and the truth :)
I got this tattoo for my little cousin Kyle who is a histio warrior. its blue for Langerhans cell histiocytosis and rare disease the symbol means warrior because that's exactly what he is. our Histio Warrior♥333
Overview of HLH - Dr. Michael Jordan, MD In memory of our histio warrior Hendrik and our histio warrior Andrea.
Meet Ryan - a true Histio Warrior - fighting histio and only 20 months old. Please help share Ryan's story so we can raise awareness about this rare disease...langerhan cell histiocytosis.
For Ryan, my hero ♥
histio.... disease my dad died of. i have the blue ribbon tattooed on my arm with the date he passed away.
Do you know Histio?