Wednesday, March 30, 2011
Three Steps Forward, Two Steps Back
Three steps forward, two steps back, one step forward, two steps back....I just wish I could put on my Ruby Slippers and click my heals together three times saying the magic words..."There's no place like home, I want Hayden to come home, I just want Hayden to get better and come home"...and the Good Witch of the West will waive her wand and magically transport us out of this dream and back home safe and well.
Wednesday, March 23, 2011
Get Well Cards from Hayden's 5th Grade Class and their special Kingergarten Buddies
Hayden got a great care package from Old Mill School today. A bunch of get well cards made by his 5th grade class mates and their special Kindergarten buddies. We posted all of the awesome cards up in Hayden's room.
Tuesday, March 22, 2011
Hayden Fights Influenza and Pneumonia
Today is day 20 in the hospital. Our odyssey started at Marin General Hospital on March 1st. Sunday March 6th we went transferred to UCSF and on March 9th we made the difficult decision to put Hayden on a ventilator. Although being on a ventilator is not fun in any way, Hayden keeps himself occupied by watching movies, occasionally playing Wii and computer, but mostly lots and lots of sleep. Hayden does lots of hard and often painful work on the ventilator to help the doctors clear his lungs. He is very brave and a true champ. He is an inspiration to me.
A big thank you to the families at Old Mill School for providing wonderful dinners for John and I while we are at the hospital. Also a big thank you to all of the warm wishes and get well cards sent to Hayden. We have started decorating the room with them.
A big thank you to the families at Old Mill School for providing wonderful dinners for John and I while we are at the hospital. Also a big thank you to all of the warm wishes and get well cards sent to Hayden. We have started decorating the room with them.
Monday, February 28, 2011
2011 Rare Disease Day
A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000.
A disease or disorder is defined as rare in the USA if it affects fewer than 200,000 Americans at any given time.
One rare disease may affect only a handful of patients in the EU, and another touch as many as 245,000. In the European Union, as many as 30 million people alone may be affected by one of the 6000 to 8000 rare diseases existing. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases touch children.
Characteristics of Rare Diseases
The 6000 to 8000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease. The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
Common Problems Faced
As aforementioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease. The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality healthcare engenders inequities and difficulties in access to treatment and care concluding in heavy social consequences for patients.
How can things change?
Although rare disease patients and their families face many challenges enormous progress is being made every day. The ongoing implementation of a better comprehensive approach to rare diseases has led to the development of appropriate public health policies. Important gains continue to be made with the increase of international cooperation in the field of clinical and scientific research as well as the sharing of scientific knowledge about all rare diseases, not only the most “recurrent” ones. Both of these advances have led to the development of new diagnostic and therapeutic procedures. However, the road ahead is long with much progress to be made.
Whant to get involved? click here
A disease or disorder is defined as rare in the USA if it affects fewer than 200,000 Americans at any given time.
One rare disease may affect only a handful of patients in the EU, and another touch as many as 245,000. In the European Union, as many as 30 million people alone may be affected by one of the 6000 to 8000 rare diseases existing. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases touch children.
Characteristics of Rare Diseases
The 6000 to 8000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease. The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
Common Problems Faced
As aforementioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease. The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality healthcare engenders inequities and difficulties in access to treatment and care concluding in heavy social consequences for patients.
How can things change?
Although rare disease patients and their families face many challenges enormous progress is being made every day. The ongoing implementation of a better comprehensive approach to rare diseases has led to the development of appropriate public health policies. Important gains continue to be made with the increase of international cooperation in the field of clinical and scientific research as well as the sharing of scientific knowledge about all rare diseases, not only the most “recurrent” ones. Both of these advances have led to the development of new diagnostic and therapeutic procedures. However, the road ahead is long with much progress to be made.
Whant to get involved? click here
Saturday, January 1, 2011
Happy New Year
Looking back on 2010 we are thankful for all of your ongoing support for FOP research. Hayden's Hope Picture a Cure event brings a smile to me when I think about how many people we had attening (over 250) and the incredible amount of money that was donated just over $108,000.
We are hopeful for a New Year filled with health, happiness and scientific breakthroughs that will propell our quest for a cure to FOP forward
Please browse our photos of the Picture A Cure fundriaser event by clicking here.
All the best for a wonderful 2011.
Sincerely,
The Pheif Family
We are hopeful for a New Year filled with health, happiness and scientific breakthroughs that will propell our quest for a cure to FOP forward
Please browse our photos of the Picture A Cure fundriaser event by clicking here.
All the best for a wonderful 2011.
Sincerely,
The Pheif Family
Tuesday, December 14, 2010
Rare Disease Day - February 28, 2011
Alone we are rare. Together we are strong. Join NORD in creating awareness for Rare Disease Day. Learn all the ways you can support 30 million Americans affected by rare diseases.
rarediseaseday.us
rarediseaseday.us
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