Hi Everyone.
My wife was diagnosed with idiopathic chondrolysis of the hip (unknown cause of deterioration to the articular cartilage of the femur head and acetabulum joint capsule) back when she was 13. This is back during the mid 1990's, when very little was known about the disease.
I found this forum and because I am a student, figured some of my research might be helpful to others who have suffered or have a loved one who has this rare condition. I just wrote a research paper on it and am now on my second paper. For those who have looked into research, you are probably aware that there is not much information around.
If you agree, or disagree with any of this information, please let me know. It may be helpful to others and it would be interesting to know when the person you know was diagnosed.
Now, I don't want to just copy and paste my paper, so I'll just try to summarize it to keep in brief.
Today, there is only 130 cases documented in medical journals, right now there are only about 123. The average age that it onsets is about 11 years old (previously thought about 13) and girls are 6x more likely to get it than boys are. It usually only affects one hip (unilateral). In 2005, researchers discovered the the majority of those who are affected by idiopathic chondrolysis of the hip, were of those who had more melanin in their skin (darker skin). They used to believe this disease was predominantly to people who are of African descendant, but the 2005 case had 20 kids from India, 18 girls and 2 boys. There are also cases of Caucasians who have this disease, but like previous said, it occurs more in those with darker skin pigments.
For those who want to know the cause, remember, this is not a fact, however it is believed that some people are genetic predisposition to idiopathic chondrolysis, researchers believe this because the serum has abnormalities and accumulating chronic inflammation within the cells of the synovium located in those joints that have been affected by idiopathic chondrolysis.
There are 3 phases of the disease. The good news is most don't go past stage 1.
1 - 50-60% - range of motion and pain is reduced and greatly improved. Rare, but sometimes it can recover almost completely.
2 - Range of motion becomes limited, which happens because of the hip joint becoming stiff
3 - Sadly, the worst case is that chondrocyte necrosis takes place (cartilage cells die) and the acetabulum and femur head fused together. If this happens, the person has a hard time being mobile.
My wife had the 3rd phase, the worst type.
Treatment -
There are surgical and non-surgical ways to handle idiopathic chondrolysis of the hip as you guys have discussed. Doctors don't agree on what treatment works best, because everyone is unique in the way their body handles the treatment.
Some use crutches, physical therapy, or analgesic drugs (pain killers that work on the peripheral and central nervous systems), but we all know no one is going to stay on pain killers forever.
Because my wife had such a bad case, 3rd phase, she had a hip fusion at 13 to minimize her pain and give her more mobility. As you are all aware, bone growth stops at different ages for boys and girls. Usually for girls their bone growth stops at about 15 and boys at 17. The other issue too with young children coming down with this terrible disease is that abnormal spinal curvatures are possible, because one leg becomes shorter than the other. My wife came down with scoliosis, because her left leg became shorter than the right, due to the lack of cartilage, which caused a LLD (leg-length discrepancy).
The fused hip prevented my wife from having children to a certain degree, as it would completely decrease her mobility at about half of her term and she would need to be put on bed rest. So at 29, she went through a total hip replacement (THR) at Emory in Atlanta. She went through a lot of PT as one can imagine. It is extremely rare for anyone that young to have a THR. Usually it does not happen until about 50+ years old.
Through my research I did not find any people who had gone through a THR, so it is interesting to know that my wife is one of the few, if only one, who had a total replacement, though I pretty certain there are others who have gone through it. The worst cases that are known have people going through partial hip replacements, where they just replace the head of the femur (ball), but not the actual socket (acetabulum), when they are both replaced, then that would be the total replacement.
--
Disclaimer - I am not a medical doctor, what I post is just my "opinion" and opinions are a dime a dozen. If you suffer from any medical conditions, always speak to your physician. Don't ever disregard what your physician or your medical professional advises you based on what you read here. If you have a medical emergency, call your medical doctor right away or call 911. Anything you do, you do solely at your own risk.
My wife was diagnosed with idiopathic chondrolysis of the hip (unknown cause of deterioration to the articular cartilage of the femur head and acetabulum joint capsule) back when she was 13. This is back during the mid 1990's, when very little was known about the disease.
I found this forum and because I am a student, figured some of my research might be helpful to others who have suffered or have a loved one who has this rare condition. I just wrote a research paper on it and am now on my second paper. For those who have looked into research, you are probably aware that there is not much information around.
If you agree, or disagree with any of this information, please let me know. It may be helpful to others and it would be interesting to know when the person you know was diagnosed.
Now, I don't want to just copy and paste my paper, so I'll just try to summarize it to keep in brief.
Today, there is only 130 cases documented in medical journals, right now there are only about 123. The average age that it onsets is about 11 years old (previously thought about 13) and girls are 6x more likely to get it than boys are. It usually only affects one hip (unilateral). In 2005, researchers discovered the the majority of those who are affected by idiopathic chondrolysis of the hip, were of those who had more melanin in their skin (darker skin). They used to believe this disease was predominantly to people who are of African descendant, but the 2005 case had 20 kids from India, 18 girls and 2 boys. There are also cases of Caucasians who have this disease, but like previous said, it occurs more in those with darker skin pigments.
For those who want to know the cause, remember, this is not a fact, however it is believed that some people are genetic predisposition to idiopathic chondrolysis, researchers believe this because the serum has abnormalities and accumulating chronic inflammation within the cells of the synovium located in those joints that have been affected by idiopathic chondrolysis.
There are 3 phases of the disease. The good news is most don't go past stage 1.
1 - 50-60% - range of motion and pain is reduced and greatly improved. Rare, but sometimes it can recover almost completely.
2 - Range of motion becomes limited, which happens because of the hip joint becoming stiff
3 - Sadly, the worst case is that chondrocyte necrosis takes place (cartilage cells die) and the acetabulum and femur head fused together. If this happens, the person has a hard time being mobile.
My wife had the 3rd phase, the worst type.
Treatment -
There are surgical and non-surgical ways to handle idiopathic chondrolysis of the hip as you guys have discussed. Doctors don't agree on what treatment works best, because everyone is unique in the way their body handles the treatment.
Some use crutches, physical therapy, or analgesic drugs (pain killers that work on the peripheral and central nervous systems), but we all know no one is going to stay on pain killers forever.
Because my wife had such a bad case, 3rd phase, she had a hip fusion at 13 to minimize her pain and give her more mobility. As you are all aware, bone growth stops at different ages for boys and girls. Usually for girls their bone growth stops at about 15 and boys at 17. The other issue too with young children coming down with this terrible disease is that abnormal spinal curvatures are possible, because one leg becomes shorter than the other. My wife came down with scoliosis, because her left leg became shorter than the right, due to the lack of cartilage, which caused a LLD (leg-length discrepancy).
The fused hip prevented my wife from having children to a certain degree, as it would completely decrease her mobility at about half of her term and she would need to be put on bed rest. So at 29, she went through a total hip replacement (THR) at Emory in Atlanta. She went through a lot of PT as one can imagine. It is extremely rare for anyone that young to have a THR. Usually it does not happen until about 50+ years old.
Through my research I did not find any people who had gone through a THR, so it is interesting to know that my wife is one of the few, if only one, who had a total replacement, though I pretty certain there are others who have gone through it. The worst cases that are known have people going through partial hip replacements, where they just replace the head of the femur (ball), but not the actual socket (acetabulum), when they are both replaced, then that would be the total replacement.
--
Disclaimer - I am not a medical doctor, what I post is just my "opinion" and opinions are a dime a dozen. If you suffer from any medical conditions, always speak to your physician. Don't ever disregard what your physician or your medical professional advises you based on what you read here. If you have a medical emergency, call your medical doctor right away or call 911. Anything you do, you do solely at your own risk.
