What Does “Salty and Sweet” Mean?

December 28, 2007 at 1:25 am | In Cystic Fibrosis, Cystic Fibrosis Related Diabetes, Invisible Disease | Leave a Comment
Tags: , , , , , , , ,

Salty:
The major sign of Cystic Fibrosis is excess salt. In fact, this is how CF is diagnosed. The Sweat Test, is a simple, painless test and the best way to diagnose CF. The test measures the concentration of salt in a person’s sweat. A high salt level indicates CF. It is actually very complicated to explain and even harder to understand the details of this disease. Basically, CF affects how salt and water moves through the cells of the body which causes very salty sweat and very dehydrated mucus (No one has ever said this is a “pretty” disease!).

salt pretzel

I was diagnosed with CF at the age of 18 months old. As a baby I had a lot of digestive problems which lead doctors to test me for CF. The doctor who diagnosed me only gave me one year to live. Luckily my parents found a specialist who was able to give me the best treatment. As I got older research progressed and therapies improved, the average lifespan has increased and increased, which now is 36.5 years old! But still… there is no cure for CF.

Sweet:
As people with CF live longer, thanks to advanced research studies and new treatments, they are having more and more complications stemming from the CF. One of these complications is diabetes. Diagnosed with Cystic Fibrosis Related Diabetes in 2000, I only now in 2007, am really realizing what a problem diabetes is and how difficult it is to manage.

sugar cupcakes

I was tested for CFRD after a lung CAT-scan which showed that my pancreas had partially autodigested (I thought that was fascinating!). My doctor ordered a glucose test which showed I had CFRD. I was relieved to have an explanation as to why I craved Noodles night and day, my many trips to the restroom even though I didn’t have that much to drink, why my lung function tests were on a steep decline and why I was always tired. Finally an answer… but I had no idea what I had in store. Diabetes is a very complicated disease to control. I now take six shots a day and I still my blood sugars are out of control. Trying to control my sugar levels is now my second full time job. Also, there is no cure for diabetes.

Why 65 Roses?

December 27, 2007 at 11:00 pm | In Cystic Fibrosis | Leave a Comment
Tags:

“65 Roses” is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary’s 4-year-old son, Richard, listened closely to his mother as she made each call.

65 red roses

After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, “What am I working for, Richard?” He answered, “You are working for 65 Roses.” Mary was speechless.He could not see the tears running down Mary’s cheeks as she stammered, “Yes Richard, I’m working for 65 Roses.”

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.

What is Cystic Fibrosis-Related Diabetes?

December 27, 2007 at 10:59 pm | In Challenges, Cystic Fibrosis, Cystic Fibrosis Related Diabetes, Invisible Disease | 1 Comment

Cystic Fibrosis-Related Diabetes (CFRD) is a unique type of diabetes. It is not the same as diabetes in people without CF. The diagnosis and treatment is not exactly the same. CFRD is extremely common in people with CF especially as they get older. CFRD is found in 35 percent of adults aged 20 to 29 and 43 percent for those over 30 years old.

Common symptoms, such as increased thirst and increased urination, are caused by high blood sugar levels (hyperglycemia). Other symptoms of CFRD are excessive fatigue, weight loss and unexplained decline in lung function.

Insulin is currently the only medication that has proven effective for treatment for CFRD. Insulin can only be given by injection. Insulin allows sugars provided by the carbohydrates that you eat to be passed from your blood stream to the body’s cells where it is used for energy.

Insulin also allows the cells of the body to take up proteins from the food we eat. Proteins help build muscle tissue. If there is not enough insulin in the body, muscle is lost. Loss of muscle can affect your breathing. Insulin allows fat in our diet to be stored in the body as body fat. Without enough insulin, fat stores are used up and weight loss occurs.

Maintaining blood glucose levels at a normal level with the help of insulin may help you gain weight, feel better and have more energy.

CFRD is not type 1 diabetes and it is not type 2 diabetes.  It is a type all its own.   I wrote a post about the differences here.

What is Cystic Fibrosis?

December 27, 2007 at 10:58 pm | In Challenges, Cystic Fibrosis, Invisible Disease | Leave a Comment

Cystic Fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Blog at WordPress.com. | Theme: Pool by Borja Fernandez.
Entries and comments feeds.