Saturday, February 26, 2011
RARE DISEASE DAY -- FEBRUARY 28, 2011 - The Petition Site
- Target: The United States Government
- Sponsored by: Stephanie Hunt
On February 28, 2011 millions of people around the world will observe Rare Disease Day for the 4th year. This is the 3rd year that the United States will join in.
Rare disorders affect the entire family of an individual patient as they endure ongoing stress and isolation while managing the medical and financial issues that arise. As a parent of a child with a rare disorder, Stephanie knows very well the hardships that must be overcome.
As Mrs. Michigan America 2010 and Mrs. United States 2007, Stephanie has fought hard for the recognition this day will bring. Rare Disease Awareness is the platform that Stephanie promoted in her reign as Mrs. United States 2007 and she continues to work as a spokesperson for NORD, The National Organization for Rare Disorders.
The goal of this petition is to collect signatures from all walks of life, from those that stand with, behind, and for those affected by Rare Disease. Collectively we can show that we do care and will take care of our most vulnerable citizens.
Please sign this petition and visit the NORD Website to find out more about how you can continue to help bring this day to life in each and every state in America.
With respect,
Stephanie
RARE DISEASE DAY -- FEBRUARY 28, 2011 - The Petition Site
- Target: The United States Government
- Sponsored by: Stephanie Hunt
On February 28, 2011 millions of people around the world will observe Rare Disease Day for the 4th year. This is the 3rd year that the United States will join in.
Rare disorders affect the entire family of an individual patient as they endure ongoing stress and isolation while managing the medical and financial issues that arise. As a parent of a child with a rare disorder, Stephanie knows very well the hardships that must be overcome.
As Mrs. Michigan America 2010 and Mrs. United States 2007, Stephanie has fought hard for the recognition this day will bring. Rare Disease Awareness is the platform that Stephanie promoted in her reign as Mrs. United States 2007 and she continues to work as a spokesperson for NORD, The National Organization for Rare Disorders.
The goal of this petition is to collect signatures from all walks of life, from those that stand with, behind, and for those affected by Rare Disease. Collectively we can show that we do care and will take care of our most vulnerable citizens.
Please sign this petition and visit the NORD Website to find out more about how you can continue to help bring this day to life in each and every state in America.
With respect,
Stephanie
Friday, February 25, 2011
.: My phobia of doctors almost cost me my life
My phobia of doctors almost cost me my life
Support Rare Disease Day, February 28, at Heyn Hall, St Mark’s Chuch, Sydenham – 11am to 2pm
Terry Hoey is a well-known champion of causes such as Rare Disease Day but, he tells Megan Conroy, his ‘white-coat syndrome’ made him neglect his own healthThe next few hours are crucial,’ are words dreaded by anybody but for an east Belfast man they were the words that saved his life. Terry Hoey (59), from Palmerston Road, had for 30 years struggled with a debilitating phobia that nearly cost him his life — a fear of doctors.
Those who have met Terry through his work heading up Palmerston Residents’ Association or tirelessly campaigning on issues ranging from Rare Disease Day to the demolition of Harland and Wolff founder Gustav Wolff’s home will have had no inkling of this secret phobia — or his severe illness.
A few weeks before Christmas, Terry had begun to feel unwell but believing he was just under the weather, he ignored the pain until finally his wife Maureen found him lying in a pool of blood after he collapsed in the |bathroom.
After being rushed to the City Hospital, physicians confirmed that Terry was suffering kidney failure and had suffered a mild seizure. He needed 12 stitches for the cut he suffered to his head but, for Terry, his surroundings caused him more fear than the needle. Maureen was told that her husband was “very ill”.
And as if things weren’t bad enough, Maureen lost an eye in a freak accident as Terry was recovering. “I was upstairs trying to pull a plug out of the socket, I caught my eye on the table. The pain was horrendous, I was taken to the hospital where I had to have my eye removed,” she says.
Now the couple are adjusting to a new set of realities and Terry is keen to encourage other people sharing his fear of physicians not to bury their heads in the sand as he did.
“I have always been terrified of going to see a doctor. It’s something that has been with me for such a long time. If I have to force myself to see a doctor, I usually come out thinking the diagnosis is fatal. I began taking my wife with me so she could explain later that I was not given bad news,” he explains.
Maureen noticed a few days before he collapsed that Terry was declining. She says: “Terry had no appetite for a few days, he began having hallucinations and was getting weaker by the day. He began to fall over things.
“I had no idea what was wrong with him but would never have imagined it was kidney failure.”
Terry was diagnosed as bipolar 16 years ago and believes that his phobia is related to his condition. When he first began to feel ill, his wife, friends and family assumed that his symptoms were because of that.
“I would often go in and out of spells of depression. I would be on a high for a few weeks and then I would get really down — so down that I would be out of work for seven weeks at a time,” states Terry. “I did not know I had bipolar; it went undiagnosed because I could not face going to the health centre.
“I have been getting treated for the condition for 10 years, seeing psychiatrists and getting medication but the white-coat syndrome remains.”
Facing his biggest fear after being admitted to hospital Terry talks highly of the City Hospital: “The staff at the hospital have been great, they comprehend my phobia and have tried to help me through it. It was always my biggest nightmare, but now they have been able to diagnose other problems I have.”
Now undergoing kidney dialysis, Terry looks a picture of health and appears unfazed by his illness.
“I feel better now than I have done in years. The dialysis drives me crazy though having to go to the hospital three times a week. I blog when I am having dialysis. It helps take my mind off it.”
He has ruled out the prospect of a kidney transplant for the moment: “The physicians have told me I will need to have a transplant but the Government do not class me as high-risk |because of my age and I would not be prepared to ask any member of my family to be a live donor.”
“I have felt better since the dialysis. My mind is also at ease because I used to think that the hernia was cancer.”
Terry, who was a sewing-machine engineer by trade, retired after developing arthritis in his hands. He then threw his energy into community projects and campaigning for Rare Disease Day, an issue that is close to his and Maureen’s hearts.
Terry’s grandson Cavan was diagnosed with two rare diseases seven years ago, and since then Terry has been an avid supporter of Rare Disease Day.
“Cavan suffers from HLH and XLP. Both diseases are hereditary but it basically means that Cavan has a very low immune system; he can run around and play but he has regular visits to the hospital and general colds and ‘flu could be fatal to him. He has such a high spirit though, you would not know he was poorly.”
The Cavan Tommy Hoey Trust was set up to raise funds for rare diseases and Terry hopes that this year he will be able to set up a trust for the whole of Ireland.
Rare Disease Day will be held in St. Mark’s Church, Sydenham, on February 28 and Terry hopes that it will have a good turn-out. Terry said: “At the minute we use our own money to fund these events, we put up the posters and try to get people interested. We want to talk out for those that have no voice. Some people have no idea about rare diseases let alone how many people in Northern Ireland suffer from them.”
Terry becomes agitated when |describing the lack of awareness sur
“When we take our collection boxes into shops, the assistants think up any excuse not to put them up, but if it was something like breast cancer they’d be more than happy to. There are so many families that are not receiving any benefit support in this country, |diagnosis can take up to six months here —it is a disgrace.
“Our health system is 36 years behind the rest of the UK.”
Terry is disgusted at the current plans to cut benefits in the UK. “All you hear from the MPs and MLAs is their plans to cut the health budget — it is ridiculous. It will be our kids paying for it; our hospitals have bloody nothing.
“When Cavan comes to visit, the hospital in England rings the Royal Victoria in advance so that the are aware of his condition. It just shows how far advanced the rest of the UK is when it comes to rare diseases.”
Terry, who blogs daily about health issues and his progress in raising awareness, has faced many hurdles in his quest. Last year he sent out over 150 invitations to local politicians and MLAs asking them to attend the Rare Disease Day — only one showed up.
“Naomi Long is the patron for the trust. She has always showed her support but the rest do not seem interested. We survive on donations from generous people and companies. The airports give some monetary gestures from time to time.”
Terry has found himself in a network of people suffering rare diseases that spans the globe.
“I get emails from people from Canada and the USA wanting to tell their story. It is eye-opening.”
When Terry is not busy campaigning about rare diseases he is helping run the Palmerston Residents’ Association. In the past he has protested against the demolition of historical buildings such as Gustav Wolff’s house just down the road from his home.
Terry said: “We do not want this area to be stuck with apartment blocks and become a built-up area. Already we have seen a drastic change since they knocked down houses and shops. There are many elderly residents here and it is not best for them when they have to travel to do their shopping. As part of the group we have managed to get the kerbs lowered so people with disability can get around more easily, we are in favour of the proposals for social housing in the area. However, more of projects like that are needed.”
When Terry claims that he will be going back to his association work after Rare Disease Day, Maureen quickly dismisses his plans: “No you will not, you will be taking it easy, you have too many operations coming up.”
Despite their ups and downs Terry and Maureen are an inspiration. Their charity work and constant battle with the health system shows that you will fight, if it is a cause you truly believe in.
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Submited at Thursday, February 24th, 2011 at 6:00 pm on Uncategorized by killian
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Thursday, February 24, 2011
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Tuesday, February 22, 2011
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Rare Lung Diseases Consortium / RLDC, Cincinnati Children's Hospital Medical Center
Check out this website I found at cincinnatichildrens.org
Monday, February 21, 2011
Reye's Syndrome - Description of Reye's Syndrome
In the 1960s and 1970s, as many as 500 children in the United States per year were affected by Reye's syndrome, a serious, often fatal disorder.It is still not known exactly what causes Reye's syndrome to develop, but research has shown an association between the development of the syndrome and the use of aspirin to treat flu-like illnesses and chicken pox. Reye's syndrome is not contagious.
The number of cases of Reye's syndrome in the U.S. has dropped to 50 cases per year, due to educational campaigns that resulted in a decreased use of aspirin to treat children’s illnesses. More cases of Reye's syndrome occur during flu season -- the months of January, February and March. Most (90 percent) of those affected by Reye's syndrome are under age 15, but it may also affect teenagers and adults.
Attacks the Liver and Brain
Reye's syndrome affects many organs in the body, but particularly the liver and brain. It causes damage to the cells in the liver, which interferes with the liver’s ability to remove wastes from the body. These wastes, especially ammonia, cause brain injury and swelling (encephalopathy).Symptoms
Usually the flu, viral illness, or chicken pox is almost over, and the child is starting to recover, when the symptoms of Reye's syndrome begin:First stage:
Loss of energy, lethargy Nausea and vomiting Drowsiness Second stage:
Personality changes such as irritability, aggressive behavior Disorientation, confusion Drowsiness and lethargy may change to unconsciousness (coma) Seizures Diagnosis
The diagnosis of Reye's syndrome is based on the child having had a viral illness (especially if treated with aspirin), plus the symptoms the child is having. Special blood tests for ammonia level and liver function (AST and ALT) are done.Many types of illnesses and disorders have symptoms similar to Reye's syndrome, so medical providers may diagnose the symptoms as something else. One important clue to Reye's syndrome is the viral illness that was present before the symptoms started.
Treatment
Reye's syndrome is a serious illness. As many as 50 percent of individuals who develop the syndrome die from it. The individual with Reye's syndrome needs intensive care to reduce the brain swelling quickly to prevent permanent brain damage, and to prevent other complications from the disorder. Early diagnosis and prompt treatment will improve the individual’s prognosis.Prevention
Since the use of aspirin and aspirin-containing products is associated with increased risk of Reye's syndrome, The National Reye's Syndrome Foundation, the Surgeon General, the FDA, and the CDC recommend that those medicines not be given to children or teenagers who have the flu, an illness with a fever, or chicken pox.You may recognize some brands, such as Bayer or St. Joseph, as aspirin, but there are other products which contain aspirin, such as Anacin, Excedrin, Dristan, and Pamprin, or contain chemicals like aspirin, such as in Pepto-Bismol. If you aren’t sure if something contains aspirin, ask your doctor or pharmacist. The National Reye’s Syndrome Foundation also has a list of products containing aspirin that can help you.
Source:
The National Reye’s Syndrome Foundation. What is Reye’s Syndrome?
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Belfast Rare Disease Day Who Is It For And Why Is It So Important For Northern Ireland - Children's Hospital Los Angeles - Zimbio
Children's Hospital Los Angeles
Children's Hospital Los Angeles is a nonprofit organization that runs a hospital in Los Angeles. The organization is based in Los Angeles, LA and managed by Walter W. Noce Jr. Its official home on the web is http://www... [more]
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