Saw this article online when I googled CF news and it's a nice article, but it kinda bothers me that the older CFer, whose quoted as saying she spends $6000 a month on one of her nebulized antibiotics, is shown in a photo holding an 8 month old CFers from another team who was diagnosed thru newborn screening.
Bemidji to host first Cystic Fibrosis Walk
Molly Miron Bemidji Pioneer
Published Friday, May 18, 2007
Clara Hoyum and Micki Alberts were diagnosed with cystic fibrosis on the day they were born a quarter of a century apart.
CF is a genetic disorder that causes clogged lungs leading to life-threatening infections and interferes with the body's ability to break down and absorb food.
In the 1950s, few children with CF lived to enter first grade. Since then, life expectancy has increased through adulthood into middle age.
<u>Micki Alberts, who will lead Team Micki at Saturday's Cystic Fibrosis Great Strides Walk, holds Clara Hoyum, who at 8 months old will be the leader of Team Clara. Micki and Clara suffer from cystic fibrosis, a genetic disorder that affects the ability to breathe. At their left are Micki's son, Payton Alberts, 3, and Missy Hoyum, Clara's mother. Pioneer Photo/Molly Miron </u>
Molly Miron Archive
At 26, Micki sees herself as part of the new generation of CF sufferers. She and her husband, Michael, have a 3-year-old son, Payton. Micki's example of relatively good health and happy motherhood gives Clara's parents, Missy and Bryan Hoyum, hope that their daughter, now 8 months old, can live long and prosper.
Clara, in her mother's arms, and Micki, will lead the first Cystic Fibrosis Great Strides Walk on Saturday beginning with 9 a.m. registration at Lincoln Elementary School. Micki launched the Great Strides project to raise money for the Minnesota Chapter of the Cystic Fibrosis Foundation, and to educate area residents about the disease. Walkers will be bused to Cameron Park and walk back to Lincoln School.
"I was born in May, and they said I wouldn't make it to Christmas," Micki said.
When she beat those odds, the prognosis was death before she was 3. Then it was death before her early 20s. She said the life expectancy increases at a steady pace because of research, funded in part by the CF Foundation, and development of more effective treatments.
CF is caused by a defective gene, which is carried by one-in-31 people in the United States. People who inherit one copy of the gene do not develop the disease, and usually don't know they are carriers.
However, people who inherit a copy of the defective gene from both parents develop the disease. It is also a disease often misdiagnosed as asthma or some other condition that causes difficulty in breathing, Micki said.
Micki said her husband tested negative for the CF gene, so Payton doesn't have the disease. No one in her family knew they were carriers, or of anyone who had CF. However, she said, a great uncle might have died of it. She said he died young and people remembered that he coughed frequently.
Missy said both she and her husband carry the CF gene. In these cases, on average 25 percent of a couple's children will inherit the two copies, 50 percent will inherit one copy and become carriers and 25 percent will not have CF or carry the gene. The Hoyums' older child, Dawson, 6, is CF-free.
Missy said she and her husband had no idea they were carriers. She had a half cousin who died 30 years ago at age 10 of CF, but that connection seemed too remote to worry about.
The Minnesota Department of Health now routinely tests every newborn for CF. The Hoyums received the positive results two weeks later.
"She's fairly healthy right now," Missy said, as Clara played on a blanket at her feet. "So far, her lungs are pretty good. The hardest part for me is knowing she'll progressively need more medication. But I see Micki, and I see she has a child, and she gives us hope."
Micki is also a Bemidji High School graduate and a professional who works at Wilderness Waves Salon and Spa.
"It just puts a big cloud over you, but I was able to show if you take care of yourself, you can lead a normal life," Micki said. "There could be worse things."
One of the hard parts of living with CF, she said, is that people with the disease generally look healthy on the outside. But their treatments and medications are expensive and burdensome. Micki said her father, Don Wilson, worked in the Twin Cities when she was growing up so he could be a union member and qualify for health insurance for her.
"I was close to meeting the limit on my dad's insurance - $1 million," she said.
Her mother, Cherry Wilson, stayed home to take care of Micki.
"That was one of the first things the doctor asked us - 'Are you going to be able to stay home with her?'" Missy said.
They have insurance through Bryan's employer, Great Lakes Gas.
Now Micki is on Medical Assistance, which helps with equipment like her Vest Airway Clearance System - a pressurized vibrator - and medication nebulizers.
"My one nebulizer medicine is over $6,000 for one month," she said.
She added that her next project after launching the Great Strides project is to work on government to improve health care coverage.
For more information on cystic fibrosis, visit cff.org.
Bemidji to host first Cystic Fibrosis Walk
Molly Miron Bemidji Pioneer
Published Friday, May 18, 2007
Clara Hoyum and Micki Alberts were diagnosed with cystic fibrosis on the day they were born a quarter of a century apart.
CF is a genetic disorder that causes clogged lungs leading to life-threatening infections and interferes with the body's ability to break down and absorb food.
In the 1950s, few children with CF lived to enter first grade. Since then, life expectancy has increased through adulthood into middle age.
<u>Micki Alberts, who will lead Team Micki at Saturday's Cystic Fibrosis Great Strides Walk, holds Clara Hoyum, who at 8 months old will be the leader of Team Clara. Micki and Clara suffer from cystic fibrosis, a genetic disorder that affects the ability to breathe. At their left are Micki's son, Payton Alberts, 3, and Missy Hoyum, Clara's mother. Pioneer Photo/Molly Miron </u>
Molly Miron Archive
At 26, Micki sees herself as part of the new generation of CF sufferers. She and her husband, Michael, have a 3-year-old son, Payton. Micki's example of relatively good health and happy motherhood gives Clara's parents, Missy and Bryan Hoyum, hope that their daughter, now 8 months old, can live long and prosper.
Clara, in her mother's arms, and Micki, will lead the first Cystic Fibrosis Great Strides Walk on Saturday beginning with 9 a.m. registration at Lincoln Elementary School. Micki launched the Great Strides project to raise money for the Minnesota Chapter of the Cystic Fibrosis Foundation, and to educate area residents about the disease. Walkers will be bused to Cameron Park and walk back to Lincoln School.
"I was born in May, and they said I wouldn't make it to Christmas," Micki said.
When she beat those odds, the prognosis was death before she was 3. Then it was death before her early 20s. She said the life expectancy increases at a steady pace because of research, funded in part by the CF Foundation, and development of more effective treatments.
CF is caused by a defective gene, which is carried by one-in-31 people in the United States. People who inherit one copy of the gene do not develop the disease, and usually don't know they are carriers.
However, people who inherit a copy of the defective gene from both parents develop the disease. It is also a disease often misdiagnosed as asthma or some other condition that causes difficulty in breathing, Micki said.
Micki said her husband tested negative for the CF gene, so Payton doesn't have the disease. No one in her family knew they were carriers, or of anyone who had CF. However, she said, a great uncle might have died of it. She said he died young and people remembered that he coughed frequently.
Missy said both she and her husband carry the CF gene. In these cases, on average 25 percent of a couple's children will inherit the two copies, 50 percent will inherit one copy and become carriers and 25 percent will not have CF or carry the gene. The Hoyums' older child, Dawson, 6, is CF-free.
Missy said she and her husband had no idea they were carriers. She had a half cousin who died 30 years ago at age 10 of CF, but that connection seemed too remote to worry about.
The Minnesota Department of Health now routinely tests every newborn for CF. The Hoyums received the positive results two weeks later.
"She's fairly healthy right now," Missy said, as Clara played on a blanket at her feet. "So far, her lungs are pretty good. The hardest part for me is knowing she'll progressively need more medication. But I see Micki, and I see she has a child, and she gives us hope."
Micki is also a Bemidji High School graduate and a professional who works at Wilderness Waves Salon and Spa.
"It just puts a big cloud over you, but I was able to show if you take care of yourself, you can lead a normal life," Micki said. "There could be worse things."
One of the hard parts of living with CF, she said, is that people with the disease generally look healthy on the outside. But their treatments and medications are expensive and burdensome. Micki said her father, Don Wilson, worked in the Twin Cities when she was growing up so he could be a union member and qualify for health insurance for her.
"I was close to meeting the limit on my dad's insurance - $1 million," she said.
Her mother, Cherry Wilson, stayed home to take care of Micki.
"That was one of the first things the doctor asked us - 'Are you going to be able to stay home with her?'" Missy said.
They have insurance through Bryan's employer, Great Lakes Gas.
Now Micki is on Medical Assistance, which helps with equipment like her Vest Airway Clearance System - a pressurized vibrator - and medication nebulizers.
"My one nebulizer medicine is over $6,000 for one month," she said.
She added that her next project after launching the Great Strides project is to work on government to improve health care coverage.
For more information on cystic fibrosis, visit cff.org.