The Atypical HUS Foundation

Hello everyone , this is my first time posting and I'm looking for some answers, suggestions or maybe just comfort. I want to start off by apologizing , I don't know all the correct terms and might not know a lot of info as this is all new to me and my family. My sister has kidney failure, her kidneys do not function at all because of ahus . She'said been on dialysis for about a year now and started pd dialysis about 6 months ago. She is also on soliris every two weeks. She has been doing great with her pd and her numbers from blood work and tests always come out great according to all her docs. We have started the process of a transplant. The one thing that has us scratching our head and worrying is her leg pains. For the last six months , about the time she started pd she has been having pain on her thighs. Her toes are fine, she is able to do calf rises , knees were great but her thighs cause her a whole lot of pain. It can get so bad where she is sometimes not able to walk. It takes her a while for her legs to "warm up" every morning so she can even get out of bed. The pain lessens throughout the day and sometimes goes away for a few minutes but ultimately returns and become unbearable. She has developed a limp and walking is the hardest thing for her to do. We have gone through all the test and scans and biopsys and checkEd for clots and vitamin d phosphorus calcium all comes back fine. Doctors can't figure it out they say. Her first physical therapy appointment is this Friday. We are stumped and worried. She is a 21 year old and she can't walk at time. Has anyone heard or gone through any of this. Thank you for taking the time to read this. Take care

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