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Does anyone have XLH Ricketts and are in the adult stage?
I have XLH Ricketts and am now 38 yrs old I was diagnosed at 18 months old. I am a spontaneous case which is rare due to the fact that it's a hereditary disease of 1 in 20k people have. I am needing someone in adult stages to ask questions with
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@summer38 I found another member who posted about having Ricketts at an early age. Hopefully you can meet @SusanEllen66 who posted about Ricketts here. https://connect.mayoclinic.org/comment/839378/
She'll probably get notified that I mentioned her, and hopefully she'll join you here in your discussion. You can also respond to her post, but that's not a discussion specifically about Ricketts.
Connect is a great place to meet others who have rare conditions, and membership is growing all the time. Hopefully, you can connect and help each other.
As a toddler diagnosed with rickets I have tried to find information about what the problems an adult might experience. Is anyone aware of a website with information which might explain what conditions I might be experiencing at 78 years old? Thank you.
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1 Reaction@summer38 @jenniferhunter @suzfuse46
My mom told me I had rickets because I couldn’t hold the milk down. She said I would throw up after feeding.
I am 75 years old now, and I know doctors did things differently now than way back when. My parents probably were not given any information regarding how it would affect my body in the future. So, who knows what was done for me.
I was a sickly child and my adult self is not any better. I haven’t been formally tested as an adult, but my weak tendons and double joints in my elbows may be the result of Rickets.
@suzfuse46 maybe you could
Look up whatever condition you are wondering about and check if a Vitamin D deficiency as a child would cause it.