This is a press release submitted to the Las Vegas Sun. It has not been verified or edited by the Sun.
HPP-Choose Hope to Observe Rare Disease Day
Published on Sun, Feb 24, 2013 (11:29 a.m.)
FOR IMMEDIATE RELEASE
February 25, 2013
HPP-Choose Hope to Observe Rare Disease Day
Las Vegas, NV---HPP-Choose Hope will be joining other National Organizations around the world in observing World Rare Disease Day on February 28, 2013. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern.
“Hypophosphatasia or HPP is the focus of HPP-Choose Hope, which is located here in Las Vegas, NV. A disease known for its impact on bones and its estimated 1 in 2 infants with infantile onset of the disease leads to death.” HPP-Choose Hope was started here in Las Vegas after David was diagnosed with HPP in March 2012 after 2 years of searching for answers to his being sick and multiple bone fractures. “It took a Doctor (Dr. Neil Braunstein) here in Las Vegas to think outside the box and who really wanted to help me.” After a number of blood tests and looking over the past two years of David’s medical records he found a link, low phosphorus. Sending David to UCLA medical center and being hospitalized for 4 days the diagnose was given. “You have Hypophosphatasia, a rare bone disease, with no treatment or cure.”
Like most patients who receive that news “you’re devastated” said Jennifer, David’s wife and co-founder of HPP-Choose Hope. “You never think it could never happen to you and then to find out that it is a rare disease and there is no treatment or cure, your world stops.”
Hpp patients are missing the enzyme needed to metabolize minerals into the bones. This leaves their bones weak and fragile. David went on to say “one of the complications of having HPP is fractures heal slowly and patients have constant bone pain which limits there ability to walk or stand for any length of time.” You can start your day just fine and for no reason your body will just start to hurt. It’s not a muscle ache but more like hot bone pain in the long bones. They can hurt so bad you feel like someone hit you with a 2x4. It can last anywhere from hours to days, and the affected limbs can feel like their broken.
There are nearly 30 million Americans, and millions more around the world affected by rare disease,” said Jennifer, founder of HPP-Choose Hope. Everyone knows someone with a rare disease, while many of these diseases are serious and life long; most have no treatment or cure like Hypophosphatasia. This leaves patients and families without hope.
A rare disease is one that affects fewer that 200,000 Americans. There are nearly 7,000 such diseases affecting nearly 30 million Americans. HPP-Choose Hope wants to promote awareness of the challenges of living with a rare disease.
“Someone can see you in the morning walking or at work and looking fine, and in the afternoon that same person can’t believe you can’t move. The bad part about Hypophosphatasia is that you look healthy but you are in chronic pain that stops you in your tracks. One day you can walk a box store just fine with little to no pain and you have no fatigue. The next day or even that same day walking around a mini mart seems like you are running a marathon. You barely have enough muscle strength to get around the store. There has been shopping trips to the grocery store and you have to leave the cart and struggle to get out to the car because there was no way you could stand in line to check out.”
“This Rare Disease Day the message we would like to get out to the public is that while HPP is considered a rare disease, the challenges faced by patients and their families include delayed diagnosis, few treatment options, and difficulty finding medical experts. There is no approved treatment and No Cure.
“We need your help to find the cure for tomorrow’s HPP patients and the treatment for today's. Please join us in our “I Choose Hope” message and donate today!” You can go to their web site to get more information about Hypophosphatasia and to donate.
www.hppchoosehope.org or call 855-HPP-RARE (855-477-7273)
- Citing ‘communistic mentality,’ son of Cliven Bundy withdraws children from county school
- College football by the odds: Vegas picks and preview of week 1 on the gridiron
- Military plane makes emergency landing at McCarran
- Utah university removes Harry Reid’s name from center
- Victim’s family feels sorry for girl who shot him