Comments on: BHD diagnosis after lung collapse http://www.bhdsyndrome.org/forum/introduce-yourself-to-the-forum/bhd-diagnosis-after-lung-collapse/ 'Research and Support' Thu, 02 Sep 2010 16:46:57 +0100 http://wordpress.org/?v=2.8.4 hourly 1 By: jcadiz74 http://www.bhdsyndrome.org/forum/introduce-yourself-to-the-forum/bhd-diagnosis-after-lung-collapse/comment-page-1/#comment-29 jcadiz74 Sat, 26 Sep 2009 10:16:42 +0000 http://www.bhdsyndrome.org/?p=735#comment-29 Thanks! I am getting kidney ultrasounds once/year just to be sure. For this reason I hope my family members who have had lung issues will get tested, so that their docs will be checking their kidneys regularly too! Thanks! I am getting kidney ultrasounds once/year just to be sure. For this reason I hope my family members who have had lung issues will get tested, so that their docs will be checking their kidneys regularly too!

]]> By: Myrovlytis Trust http://www.bhdsyndrome.org/forum/introduce-yourself-to-the-forum/bhd-diagnosis-after-lung-collapse/comment-page-1/#comment-16 Myrovlytis Trust Wed, 08 Jul 2009 10:36:25 +0000 http://www.bhdsyndrome.org/?p=735#comment-16 Hi and thanks for getting in touch. I'd like to address a few of the issues you raised but I'd like to point out that I'm not a Medical Professional. With regards to your diagnosis, the majority of individuals with BHD have one mutated copy of the gene, as you do. This is in no way an indicator of what symptoms you will get - it is unlcear why some people with BHD develop kidney problems and why some don't. Current research indicates that approximately 34% of BHD patients develop kidney tumours and the best thing to do if your concerned about this is to talk it over with your doctor. I hope this has helped. Hi and thanks for getting in touch.

I’d like to address a few of the issues you raised but I’d like to point out that I’m not a Medical Professional.

With regards to your diagnosis, the majority of individuals with BHD have one mutated copy of the gene, as you do. This is in no way an indicator of what symptoms you will get – it is unlcear why some people with BHD develop kidney problems and why some don’t. Current research indicates that approximately 34% of BHD patients develop kidney tumours and the best thing to do if your concerned about this is to talk it over with your doctor.

I hope this has helped.

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