Hyper PARAThyroid Disease-Alert the media!

This disease needs more recognition is very dilibitalting

ITS A LIVING HELL

Canada

My husband and I BOTH suffered for over ten years with this disease because our doctors didn't know how to diagnose it. My doctor kept telling me I was "just getting old" when I complained of joint and bone pain, fatigue and memory/concentration problems. And even though Hyperparathyroidism causes over 50% of all kidney stones, my husband, who suffered from kidney stones for years, had never been tested by his regular doctor, his urologist, OR his nephrologist. We were both in stage three kidney failure but had never even been told! Thankfully I discovered the website www.parathyroid.com and within a couple of months we had both had our surgeries, were out of pain and on the road to almost full recovery. Because my calcium levels had been so high for so long I have had permanent joint damage, but fortunately my kidney function has improved to almost normal and my Osteoporosis is expected to improve on its own, without any drugs!. Think about it. What are the most common symptoms people complain of and are often told "You're getting old, you should expect that!"?Aches and pains, fatigue, memory problems! Those are also three of the main symptoms of Primary Hyperparathyroidism! And MANY women who are being treated with "bone building drugs" for osteoporosis will never have any improvement because nothing can override the massive amounts of PTH hormone telling their bones to release calcium into their bloodstream. Some simple blood tests can determine if this is what you have. Serum Calcium, Parathyroid hormone (PTH) and a Vitamin D test is also useful because most people with Hyperparathyroidism have extremely low Vitamin D levels. So if you KNOW something is not right with your body, and you have these symptoms, you should insist on these easy blood tests to at least rule out Hyperparathyroidism! And especially if you have Osteoporosis and your doctor wants to put you on dangerous bone building drugs!

This disease almost killed me 2 times. Needed heart ablation & then visit to A&E with organ failure. Am now facing a lump in my breast & intense bone pain with my Right hip giving way very often when I work.

I am suffering with this terrible disease and it needs to be made more aware about the dangers of elevated calcium continuously rather than it reaching a certain point.

Recently diagnosed

Fellow sufferer

There is so much mis-information around about this disease which can severely affect people's quality of life especially within the medical profession. We need to improve education and update doctors knowledge.

Something needs to be done, this disease can kill but gets no publication

Recovering from operation, never heard of it before I had it

I have had this condition and had radio guided MIRP in 2010 that removed 1 adneoma. I just had bloodwork and my PTH is elevated again to 75 almost 6 years later. I fear I have another adneoma! The public and doctors are lacking in correct knowledge of this devastating disease, Thank you for creating this petition and please all sign, awareness needs to be raised. Someday yourself or someone you love may be affected.

Although this disease is classified as rare, I believe it is not a rare occurrence. It is more likely that it is rarely diagnosed due to physicians not recognizing how harmful high calcium is to the human body and how it significantly lowers quality of life.

I had to have a mini stroke before diagnosis after 20 years of all the classic symptoms & incorrect medical care.

I am a former parathyroid patient who was blown off for years. I had to diagnose myself and ask for the test. It took 2 surgeries to cure me, it was a long, exhausting process and the disease made me miserable. I am still seeing specialists thanks to the damage this disease did to my body. We need awareness and better care!!!

I had the surgery two years ago and feel like a new person

Had this simple, life-changing surgery at NPC 11/30/2015 & for the first time in years I look forward to the future!

Please educate

I'm three weeks post op. I have suffered so much with this disease. I was lucy. My doctor was educated on this disease. There are many people who are not so lucky. We need to educate everyone and fight for the people who are struggling to get a diagnosis.

Just had one of my parathyroid glands removed last week from Norman Clinic in Tampa, FL.