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EndocrineWeb Community Advice

Alone with Pseudohypoparathyroidism - Looking for support

From: TRIT76 - 3 years 30 weeks ago

To whom it may concern -

Please find this letter as a decree to continue my knowledge of my condition of Pseudohypoparathyroidism or (PHP). As a young child, I was diagnosed with this disorder and throughout my 20's and 30's have been collecting information as how other PHP or Hyporparathyroidism patients have been coping with its effects. Having tried other online groups and contacting hospitals around the country, there has been some luck, but mostly hit and miss. Not looking for personal specifics, but more on how to cope as a whole. Each Endocrinologist I have seen, one of my first questions is how many patients have you seen or aware of for PHP. To this day, I cannot get a fix as I would get ranges as few as 5-7 cases in the DFW area to 1:200,000 (est). All I can get is, the disorder is rare and eternally curious on others with this condition.

Over time, I have wanted to explain my condition to people, but find it is better to keep it to myself as most people just don't understand, especially employers who do not have medical issues. Even though some side effects such as processing cognitive thought process, mood changes, weight gain, muscle aches and twitches, etc affect my day to day life, i try to muster through and process later. Sometimes it becomes difficult to adapt and therefore tend to stay in close trusted groups who know or by myself. Trying not to use the condition as an excuse to hold be back my potential, but does indeed play a life long role. Albeit with this approach, sometimes the effects can be much, especially in a high energy social work environment it will take a toll on a physical, social and emotional level.

My wife is aware of my condition and to my luck does work in the medical industry, but she is always gets an experience when visiting the doctor. Over time, she has grown to adapt and will talk on this matter, but it is always good to hear from one who speaks from experience.

I realize this letter is most likely a long shot, but if you or know of someone with this condition or hypoparathyroidism, I would be most grateful to hear from you and how you or they cope. .

Kind regards,


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