21 thoughts on “12 Things to Know About Rare Diseases

  1. Thanks. My daughter also has a rare disease. It is wonderful to see someone articulate life changes due to chronic and rare diseases.

    • I couldn’t agree MORE! I have 2 rare diseases and I found this on Twitter under a #rare hashtag. I share my blog at times there but mostly I keep Twitter/my blog in 2 different worlds. Glad to have found your blog. This post is AMAZING.

  2. Pingback: Five More Things To Know About Rare Diseases | raising2tweens

  3. Pingback: Another Mother’s Experience with Rare Disease | raising2tweens

  4. My daughter has histio, She had a tumor behind her eye that was pushing against her brain. She was 10 when diagnosed and is about to finish up a one year regiment of chemo. I read everything I can about histio and this is by far the most accurate, helpful article out there. Thank you, Peggy

  5. This brought tears to my eyes. My daugther too had her pelvic bone replaced due to langerhan cell histiocytosis. It will be 4 years in April. She is doing great!

  6. Thanks for this post. I know that a lot of times people don’t know what to say or what questions are appropriate to ask. I think that you are opening up an awareness and a dialogue that is much needed!

    • I have actually heard of that Melissa. Thank you so much for sharing. Remember that Feb. 28 is International Rare Disease Day. I am sorry for all you have endured. I hope you don’t have to deal with it any more.

  7. Thanks for sharing the info about Langerhans Cell Histiocytosis. I have such respect for you and other parents that keep it all together while going through so much. I think a lot of parents take having a ‘healthy’ child for granted. It sounds like you are doing great balancing it all, especially with your daughter. I will always keep your family in my prayers!

  8. Thanks for sharing the post/info about Langerhans Cell Histiocytosis. I can’t imagine how hard it is for you and other families it can impact but I have the greatest respect and awe. I think you’re absolutely right when you say you do what your gut/instincts tell you when it deals with your child. I think we are given that “power” from day 1 as Moms. And for good reason. Thanks again; I’ll share this post as well to raise more awareness.

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