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The Chicken or the EggI was recently (December) diagnosed with CGD. It has only taken 57 years for them to find out what is wrong with me. The various CGD symptoms mask themselves as to many other things; i.e., allergies, childhood ailments, etc. Today I had a bone scan and my GYN has determined it is severe osteoporosis. Can this bone loss be from CGD? I mentioned my newly diagnosed CGD to her; but was met with a blank look. Since doctors don't know what CGD is they are unable to relate it to whatever the current ailment is. How can you really know the actual cause of any medical problem you have?
Submitted by Vickie on Wed, 2007-01-03 13:23. Vickie's blog | login or register to post comments
 Hi Karen, When I was in early 20's, I developed gum disease. They said the bone that was holding my top left teeth was dissolving and they attributed it to the fact I had worn braces when I was 16. I now know it was due to CGD. There was no other reason for me to have had serious gum disease at 22. I am considering attending the national IDF conference in June. I think it might give me some more information since other than this website there is no one or nothing out there. Have you attended any prior conference or anything similiar?  I also am considering attending the conference. It is only about 5 hours away from where I live. I'm just not sure if I can get off work. I think it would be very beneficial to talk with others with CGD. My sister and I have completely different problems with the disease. I am always on line researching. I learn something new all the time. I also was in my 20's when I started having gum disease problems. I went through gum surgeries, cleanings, etc and they could never figure out what was wrong and cure it. When I started on the antibiotics after being diagnosed, the red swollen gums went away and have left me with bone loss. Although I live in Florida I am strongly considering attending. I am hoping it might give me more information and help me feel like I have the ability to handle this disease as I get older. Just knowing about this website and talking with people like you has already made me feel like I am not completely alone.
 Hi Vickie, I went to the conference in 2005 (which, ironically, was in FL) and found it to be a good experience. It was good to meet other CGDers. Between this site and the UK one that Tracey posted the link to, you should find some good resources and plenty of others going through the same. You're definitely not alone. Gina  Hi Vickie, I don't know if osteoporosis is CGD related, but I have it also. If it's caused by CGD or a result of the use of prednisolon is unknown. I'm 43yrs. and X-linked. On your search for info I'd like to give you an url: http://www.cgd.org.uk/ of the CGD research trust in the UK. You can ask your question to the CGD-nurse. I've got the experience they reply fast and with clear answers. The e-mail adress is cgd@cgdrt.co.uk many greetings and all the best. Grégor Live your life, it's worth it! |
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I also was not diagnosed until I was in my late 40's (I'm 49 now). I have bone loss in my teeth and am going for a bone density test on the 22nd. I'm not sure how that'll turn out. I know what you mean about doctors not knowing what CGD is. I happened upon a doctor in our area who has done a lot of research on it because of my sister (also with CGD) and I. I tend to blame every medical problem I get on CGD. There are very few CGD patients our age so it is interesting to find out you also are having bone loss. I didn't relate that to CGD. Keep in touch.
Karen