Emotional and physical challenges of living with a rare disease.

My photo
Hello I have a rare disease called Carpenter Syndrome. Living with a rare disease I have seen that it comes with physical and emotional challenges. My blog mainly focuses on working through some of my thoughts of living with a rare disease to help me heal from some things. I also hope that those who have rare diseases who read my blog will find it helpful and encouraging.

Friday, May 5, 2023

My kyphosis/scoliosis story- Part 1.

 One area of the body that Carpenter Syndrome can cause deformities in is the spine as some people will have a condition called kyphoscoliosis.  This has been true for me as I was diagnosed in my early teen years with kyphoscoliosis.

When I was young, my mom would notice that I had a hard time standing and sitting up straight as I would tend to slouch.  She thought it was just because I had bad posture and would give me reminders to sit up straight.  At one of my follow up appointments with my orthopedic doctor, he noticed that I had more of a rounded upper back as well as noticing some other physical signs associated with kyphosis.  After doing a physical exam and seeing my x-ray results I was diagnosed with kyphoscoliosis.  When I was diagnosed, my curves in my lower and upper back were significant and I was put in a brace for my lower and upper back.  I also saw a chiropractor on a regular basis during my teen years and would have appointments with my doctor to monitor my curves.

When my body was close to being done growing, my family and I were told by my care team at the time that my curves had not changed that much and would most likely not progress in my adult years.  I would get mild pain in my back sometimes as well as some fatigue but I did not really think that much of it.  I think part of the reason was because I had just become used to having some pain in my back.  Around the time of my upper 20s, I started having some issues with my hip and pain in my thigh area.  When I was getting an x-ray done of my hip, the orthopedic doctor that I was seeing noticed the larger curve in my lower back.  The doctor told me that my hip pain might be coming more from my back and recommended seeing a back doctor.

Shortly after this my primary care doctor had me get a more detailed x-ray of my back to see the degrees of my curves.  My x-ray results came back showing a 30 degree curve in my lower back and a 70 degree curve in my upper back.  I will talk more about this in my next blog.  Sincerely Laura.


No comments:

Post a Comment