Monday, November 24, 2008

65 Roses Or Cystic Fibrosis

Cystic fibrosis (also known as CF, mucovoidosis, or mucoviscidosis) is a hereditary terminal disease of the lungs and pancreas marked by severe coughing and malnutrition. It affects the exocrine (mucus) glands of the lungs, liver, pancreas, and intestines, causing progressive disability due to multisystem failure.

Thick mucus production results in frequent lung infections. Diminished secretion of pancreatic enzymes is the main cause of poor growth, fatty diarrhea, and deficiency in fat-soluble vitamins.

Often, symptoms of CF appear in infancy and childhood. Meconium ileus is a typical finding in newborn babies with CF. Individuals with cystic fibrosis can be diagnosed prior to birth by genetic testing. Newborn screening tests are increasingly common and effective (although false positives may occur, and children need to be brought in for a sweat test to distinguish disease vs carrier status).

Cystic fibrosis is one of the most common life-shortening, childhood-onset inherited diseases

In the US alone, about 1 in 4,000 are born with CF. It appears to be most common among western European populations and Ashkenazi Jews. That is to say about one in twenty-two people of Mediterranean descent are carriers of one gene for CF, making it the most common genetic disease in these populations. Incidentally, Ireland has the highest rate of CF carriers in the world, about 1 in 20.

The pancreas contains the islets of Langerhans, which are responsible for making insulin, a hormone that helps regulate blood glucose. Damage of the pancreas can lead to loss of the islet cells, leading to diabetes that is unique to those with the disease. Cystic Fibrosis Related Diabetes (CFRD), as it is known as, shares characteristics that can be found in Type 1 and Type 2 diabetics and is one of the principal non-pulmonary complications of CF. Vitamin D is involved in calcium and phosphorus regulation.

Poor intake of Vitamin D in the diet causes the bone disease Osteoporosis in which weakened bones are more vulnerable to fractures. Beisdes, people with CF also often develop clubbing of their fingers and toes due to the effects of chronic illness and low oxygen on their tissues.

Younger children with cystic fibrosis in the United States call their disease 65 Roses because the words are easier to pronounce. This trademarked phrase has been popularized by the Cystic Fibrosis Foundation.

Sixty-Five Roses, the book is the heart-wrenching, yet beautiful account of two sister's love for each another as one sister battles daily for her life with cystic fibrosis. It seems to be a lifetime story that leaves no emotion in a safe harbor. Her life seems to be a daily struggle, crammed with treatments, hospitalizations, false starts and faint hope, setbacks and unfulfilled dreams. She communicates well the complicated feelings that long-term illness can breed in families.

From the few pages that I have read, I can assure you is that it is told with complete honesty and with a soft conscience. Although I haven’t got down to finishing it, it appears that it surely would be one of the most moving memoirs that I may have ever read.

Readers tell me that each page is breathtaking, pulsating and leaves you wanting to never stop reading as the story is fascinating from beginning to end.

I can quite understand the support and love in a family towards the person inflicted with cystic fibrosis and highlights the complicated feelings that long-term illness can breed in families. Like in any battle they live and fight it together and learn to triumph over it in as many ways. Must truly be one helluva journey.

It was nominated as the Globe and Mail Best 100 Books of 2006

Read this book: your life will never be the same claims the Storycircle Book Review.

Now that I have it, I must get down to finishing it one of these days.

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

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