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Date of last update: 10/09/2017.

Forum Name: Miscellaneous Nephrology Topics

Question: Brother Diagnosed with Gitelmans Syndrome

 horsesaplenty - Sat Jun 12, 2004 11:12 pm

I would like to find out info on this disease: Gitelmans. My 18 year old brother was recently diagnosed with it and I was told that it is very rare. I was told that kidney transplants weren't an option as this is a genetic disease and it would affect the next kidneys as well. How does this disease work. I understand the kidneys excrete too much potassium leading to muscle fatigue and tiredness. He was up to 4-5 potassium pills a day (before they diagnosed this) and it still wasn't keeping his levels up. He is also having digestive problems now. Thanks for any info you are able to give. I do not live at home anymore (he just graduated) and am getting this from my, not very reliable on info much less what it was really called: mother. I just am concerned about him....
 mrsjoshsmith - Fri May 13, 2005 8:01 am

I am also looking for information. If there is no genetic testing available how can they prove that it is geneitc? I am getting discharged from the military due to this disease. I never experienced sypmtoms until I returned from Iraq in 2003. Now they are discharging me with no benefits because they say my disease was pre-exisiting and that it resulted from my genetic make-up. Do you have more information on genetic testing and the possibililty that this disease could be sporadic?
 ritasu - Sun May 31, 2009 5:27 am

I have been told I have Gitelman syndrome as well. First I want to say there IS genetic testing that can prove you have it. I just had the test done to find my defect and will know in a few months. there is only 1 state that can do the test and that is why I must wait a few months as they have to take my results out of state to do it. As far as I know (I know all I know from my kidney doctor who found this in me) the only thing that can be done is monitor and treat the problems as they come. I am on 2 Potassium pills RX form every day with HIGH potassium foods on top of it. You need to know BOTH parents MUST at lest be carers for this other wise the child will not show the problem. My doctors are saying they THINK they may soon know how to slow or maybe even stop the defect that makes this all happen. I do want to say they feel it is a few years away but it gives me hope. I am always learning more on this so if you have any more questions you can ask me at my e-mail I read it every day. I think the best thing to remember is ALWAYS ASK QUESTIONS!!!!. A kidney doctor (Nephrology Doctor) will always know the most on this. I hope this helps.
 aunt911 - Thu Jun 04, 2009 9:20 pm

My neice has antenatal bartter's which is similar to gitelmans. She struggled for 23 years and nearly died many times. I donated a kidney to her, but the bartters came back because her native kidneys were still functioning. After her native kidneys were removed, the Bartters left with them. There is a hospital in California that did transplants on Bartters patients after ours was done. They removed the native kidneys at the time of transplant. Get more opinions. Heather would be dead if we had not done the transplant. She would be in better shape now if they would have removed her native kidneys at the same time, but now they know. Heather also had the digestive problems which have resolved with the transplant and removal of her native kidneys. God bless and best wishes to you. Don't ever stop looking for answers.
 naomilo - Thu Sep 10, 2009 4:51 pm

I come from a family of 3 Gitelmans sufferers and was subjected to frequent testing during my youth to determine if I was going to develop the disorder. All these tests came back negative, it wasn't until I was about 20 when I was diagnosed with Gitelmans during a random trip to A&E. After I was diagnosed many symptoms seemed to come to light that I hadn't given a thought to. I was constantly tired no matter how much rest I got. My nights were disturbed with constant trips to the loo which I believe didn't help with my tiredness. I was very clumsy, always walking into things or dropping things. I also became very irritated at the slightest thing and would fly off the handle. My weight also shot up and I still find it hard to shift despite good diet and regular exercise. Despite all these things I manage to live with it and just get on with day to day life. As my gran would say, "Theres always someone worse off." The best thing family and friends can do is to be supportive and patient with the sufferer, this can be hard when someone is shouting at you for nothing. Also its important to ensure that sufferers are taking their meds! I took me almost 2 years to get into the habit and also to admit that I did need to take the meds.

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