Hello, my name is Jenn and I am now nearly 35. I have Osteonecrosis (AVN) which literally means "Bone Death". I was diagnosed at the age of 24. I have been through every test known to medicine to try and determine what caused it. Unfortunately, I am in the small portion of the AVN suffers that have idiopathic causes. It is a life changing and devastating disease to have. Since this is a rare disease it is extremely hard to find a doctor that really knows anything about. It is even harder to find one with specific training to treat it. This is considered an orphan disease because only .1% (that is point 1%) of the world's population have it. Since it is an orphan disease there is no research being done to help cure or prevent it.
I have a very long list of health issues to go along with having AVN; a few of them are also rare diseases. A lot of them are exacerbated by the AVN. I have 9 specialists and all of them cannot explain why I have so many health issues. My 90 year old mother in law is healthier than I am. I have to deal with constant pain and just trying to get through one day at a time. We cannot plan anything ahead of time because we do not know if I will be able to get out of bed and even be able to walk until that day comes. It is very hard on us just trying to deal with that not to mention the laundry list of other issues we deal with daily. One of the hardest things for me to except or deal with is that up to the point I was diagnosed with AVN I was healthy. I dealt with just it for 5 years without any other health problems. I got hit with all of my other health issues within 6 months and it caused me to have to retire at the age of 30.
I thank god everyday for my wonderful husband and kids; they bring the only joy in my life at this point in time. My pride in joy is my 18month old grandson. I have gotten to the point that I can't take care of him myself and that truly hurts me to my soul. I cannot drive anymore either so I can only see him is when my hubby is off work because he lives 2 hours away.
I truly believe that everything in life happens for a reason. I do not know the reason I have all of these health issues but someday I will be shown the reason. I am open to following what ever path my life is set to take all the way to the end. I am really hoping that my path will involve helping others who suffer from AVN; whether that is directly with them or educating the public. I just want to be able to help others that have had their lives so detrimentally affected by this disease. I would love to be able to help get some research done about this disease. I also want to help others with my other rare health issues.
I am open to talk to anyone that wants information or just has questions. Feel free to send me an email if you want any information.