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.
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
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!
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!
Thanks for sharing this post on Langerhans Cell Histiocytosis. I had a rare childhood disease myself called Kawasaki Disease. As a result I acquired coronary aneurysms and have survived two open heart surgeries in my 40 years on this earth. I too pledge to spread awareness. http://www.stockpilingmoms.com/2012/11/what-is-kawasaki-disease/
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.
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!
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.
I think teaching our children to be compassionate goes a long way. Having both physical and medical issues in our family, we understand all of your points.
Write across the river 
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.
Pingback: Five More Things To Know About Rare Diseases | raising2tweens
Pingback: Another Mother’s Experience with Rare Disease | raising2tweens
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
Thank you for the comment Peggy. Hugs to you and your family.
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!
I would love to talk to you more Marie. Please contact me at gina5620@gmail.com
I can only imagine how hard things must be. You are such a strong and awesome Mommy. Send love and squishy hugs your way…
Thank you Anjie!
We are so blessed to have an online community to share information like this. It helps you feel not so alone.
Absolutely Jenn
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!
Thank you. Yes, I think it is important to talk about these things.
Thanks for sharing this post on Langerhans Cell Histiocytosis. I had a rare childhood disease myself called Kawasaki Disease. As a result I acquired coronary aneurysms and have survived two open heart surgeries in my 40 years on this earth. I too pledge to spread awareness. http://www.stockpilingmoms.com/2012/11/what-is-kawasaki-disease/
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.
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!
Thank you Krissy!
Thanks for sharing! Hate to hear about sick kids! Prayer for you and your family!
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.
I think teaching our children to be compassionate goes a long way. Having both physical and medical issues in our family, we understand all of your points.