I’d like to thank Brett Altman at Skiff Medical Center for allowing me to have a face to face conversation with him along with several head of departments (ER, Outpatient, Inpatient Services) regarding my health concerns.
Recently I’ve been diagnosed having Gitelman Syndrome. It is a rare disease of the kidney which does not allow the body to retain sodium chloride (salts), which in turn causes massive loss of potassium and magnesium. It is very difficult to manage. Your body’s need for electrolytes changes minute by minute so it’s not as easy as taking a pill like you do for a headache. Your constant low levels cause many symptoms. They can be mild to horrific and they can vary day to day. The disease has caused me to lose my job. Brett and the various department heads were very receptive and helpful in discussing my unique health needs. I appreciate this very much. Since that meeting I’ve had several visits at Skiff, averaging four visits a month for blood tests and IVs. That meeting has made a big difference in my care and again wanted to thank them all for their time and allowing me to educate them with the special needs I have.
My second reason for writing is for awareness. Gitelman Syndrome affects 1 in 40,000 people. So you can understand the rareness and why most doctors do not know what this is. Most don’t come across this during their career and why it’s so difficult to treat. 1 in 200 people are carriers and most don’t know it. It is caused by an inherited mutant gene, so no worries you won’t get this by shaking my hand or being near me. Because I’m affected, however, all my three children are carriers. More information can be learned about this and other rare kidney diseases at http://rarerenal.org
When you see me, please don’t ask if eating bananas will help. I would need to consume more than 100 a day to get the potassium my body needs. One last thought. We all should learn a lot from this disease as it does not discriminate. It does not care what nation you are from, what your race, religion or sex you are. It is very unbiased. It simply doesn’t care. It gets along with everyone.
Jerry Balek
Newton