| Cystic fibrosis (also known as CF, mucovoidosis, or | | | | Younger children with cystic fibrosis in the United |
| mucoviscidosis) is a hereditary terminal disease of the | | | | States call their disease 65 Roses because the words |
| lungs and pancreas marked by severe coughing and | | | | are easier to pronounce. This trademarked phrase |
| malnutrition. It affects the exocrine (mucus) glands of | | | | has been popularized by the Cystic Fibrosis |
| the lungs, liver, pancreas, and intestines, causing | | | | Foundation. |
| progressive disability due to multisystem failure. | | | | Sixty-Five Roses, the book is the heart-wrenching, |
| Thick mucus production results in frequent lung | | | | yet beautiful account of two sister's love for each |
| infections. Diminished secretion of pancreatic enzymes | | | | another as one sister battles daily for her life with |
| is the main cause of poor growth, fatty diarrhea, and | | | | cystic fibrosis. It seems to be a lifetime story that |
| deficiency in fat-soluble vitamins. | | | | leaves no emotion in a safe harbor. Her life seems to |
| Often, symptoms of CF appear in infancy and | | | | be a daily struggle, crammed with treatments, |
| childhood. Meconium ileus is a typical finding in | | | | hospitalizations, false starts and faint hope, setbacks |
| newborn babies with CF. Individuals with cystic | | | | and unfulfilled dreams. She communicates well the |
| fibrosis can be diagnosed prior to birth by genetic | | | | complicated feelings that long-term illness can breed in |
| testing. Newborn screening tests are increasingly | | | | families. |
| common and effective (although false positives may | | | | From the few pages that I have read, I can assure |
| occur, and children need to be brought in for a sweat | | | | you is that it is told with complete honesty and with |
| test to distinguish disease vs carrier status). | | | | a soft conscience. Although I haven't got down to |
| Cystic fibrosis is one of the most common | | | | finishing it, it appears that it surely would be one of |
| life-shortening, childhood-onset inherited diseases | | | | the most moving memoirs that I may have ever |
| In the US alone, about 1 in 4,000 are born with CF. It | | | | read. |
| appears to be most common among western | | | | Readers tell me that each page is breathtaking, |
| European populations and Ashkenazi Jews. That is to | | | | pulsating and leaves you wanting to never stop |
| say about one in twenty-two people of | | | | reading as the story is fascinating from beginning to |
| Mediterranean descent are carriers of one gene for | | | | end. |
| CF, making it the most common genetic disease in | | | | I can quite understand the support and love in a |
| these populations. Incidentally, Ireland has the highest | | | | family towards the person inflicted with cystic fibrosis |
| rate of CF carriers in the world, about 1 in 20. | | | | and highlights the complicated feelings that long-term |
| The pancreas contains the islets of Langerhans, | | | | illness can breed in families. Like in any battle they live |
| which are responsible for making insulin, a hormone | | | | and fight it together and learn to triumph over it in as |
| that helps regulate blood glucose. Damage of the | | | | many ways. Must truly be one helluva journey. |
| pancreas can lead to loss of the islet cells, leading to | | | | It was nominated as the Globe and Mail Best 100 |
| diabetes that is unique to those with the disease. | | | | Books of 2006 |
| Cystic Fibrosis Related Diabetes (CFRD), as it is | | | | Read this book: your life will never be the same |
| known as, shares characteristics that can be found in | | | | claims the Storycircle Book Review. |
| Type 1 and Type 2 diabetics and is one of the | | | | Now that I have it, I must get down to finishing it |
| principal non-pulmonary complications of CF. Vitamin D | | | | one of these days. |
| is involved in calcium and phosphorus regulation. | | | | Since 1965, the term "65 Roses" has been used by |
| Poor intake of Vitamin D in the diet causes the bone | | | | children of all ages to describe their disease. But, |
| disease Osteoporosis in which weakened bones are | | | | making it easier to say does not make CF any easier |
| more vulnerable to fractures. Besides, people with CF | | | | to live with. The "65 Roses" story has captured the |
| also often develop clubbing of their fingers and toes | | | | hearts and emotions of all who have heard it. The |
| due to the effects of chronic illness and low oxygen | | | | rose, appropriately the ancient symbol of love, has |
| on their tissues. | | | | become a symbol of the Cystic Fibrosis Foundation. |