Hypopara patients deserve better quality of life - make it easier for Hypopara patients to access Forteo

I have hypoparathyroidism...

I have Hypoparathyroidism so this issue is close to my heart.

UK and rest of world need it too.

Medications to keep people alive should be made available on the PBS! Please oblige.

We are desperate to have a better quality of life please.

It only took 43 years for me to speak to somebody that has the same disorder with which I was born. That is – by any stretch of the imagination – a rather long time. In fact, the conversation took place on my 43rd birthday. You see, I have never until recently seen or spoken to another patient with hypoparathyroidism. I had spoken to my parents who were my primary carers. Endocrinologists and doctors were the other people with whom I dealt. But at no point did I have this conversation with somebody that felt the same way, knew the disorder intimately and was able to have true empathy for its effects. The ability to have the conversation with somebody who knows what the condition is and how it affects a person was a godsend, a moment that will remain unforgettable. Up to that point I felt completely isolated and at times prone to a touch of depression. Why? You would think that being surrounded by loving family and friends that it would be easy to handle having hypopara and that familial support would lend itself to you feeling better about your chances of fighting the disorder. That is true to an extent. Familial support is important, but nobody in a family can truly share the feeling of the disorder with you unless they have experienced it themselves. No member of my family has hypopara, you see. I have had it since birth and have grown up with the routine of blood tests, visits to specialists, periodic adjustments of doses of medication and at times panic attacks about symptoms that were not hypopara related. I am what I refer to as ‘limited edition’ in my family and the disorder has very much shaped the lifestyle of the family during my childhood. I was one of only two infants diagnosed with hypopara at the Royal Children’s Hospital in Melbourne, Australia in 1971. What readers must remember is that around that time any treatment of infants with the condition was experimental. Doctors were only beginning to get their head around w

U.S. hypopara patient.

This drug is Life saving.....!

I think this is a disease that needs more research and help with it definitely! !! So many children out there may have this and need help but can't get it or not know what it is. I had a great grandson that just passed away with this condition and if there had been doctors in this city that knew what it was and how to treat him him he may still be alive, yes I'm bitter. Sorry.

Im a kiwi hypopara and this stuffs not available here either. Knowing the miseries we all suffer, the sooner it is, the better. May as well start with Straya.

My name is Sarah. I am 36 years old, married and have two children. 6 years ago my life changed forever. I was diagnosed with this rare condition called Hypoparathyroidism. One year later my daughter was diagnosed then another year passed and my son was then diagnosed. My old life as I knew it just disappeared. It has been a struggle of a life time not only managing my own health with a rare condition but having the responsibility of two beautiful little human being that I created and managing them both too. We all have another condition called Nephrocalcianosis, which in basic terms is calcium deposits in our kidneys. Which is the direct result from having to supplement calcium because of having Hypoparathyroidism. Not only is this rare, but we have the rarest form of it. It's been a tough ride. And to know there is a product out there but not be able to afford it due to there being 3 of us in one family. It's very frustrating.

Short sighted not to add this drug to PBS. It keeps patients out of ED.

Please allow more research available for those suffering with this very rare condition. Because it is rare, does not eliminate the urgency to help those who have to deal with the constant unknown. The anxiety alone further produces stresses on the body causing other conditions to take hold.

I have hypopara and it is a debilitating, frustrating and mostly invisible disease to live with. We need this hormone! It is my pleasure to sign this worthwhile petition.

This is life sustaining medication- similar to a diabetic needing insulin

Please, please give these people a chance to stop or elevate daily suffering, Anxiety and fear. It is a horrible disease to live with.

Please this will help suffers like me be able to get a better drug to deal with our condition.

I have surgical Hypoparathyroidism and took Forteo to help treat this and it improved my quality of life! Please make this drug available to those who struggle with this on a every day basis.

Forteo is much more effective for avoiding long term problems with hypoparathyroidism than calcitriol and or high doses of calcium or Vit D.

Sad