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  • Supporting patients and families living with Cystic Fibrosis, through public awareness, skilled medical professionals, clinics and funding events.

  • Supporting patients and families living with Cystic Fibrosis, through public awareness, skilled medical professionals, clinics and funding events.

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What’s New

Raise Awareness for Cystic Fibrosis (CF) Take part in “CF Genes Day”
on Wednesday 25 May 2016

CF Genes Day is an annual awareness-raising event organised by the SA Cystic Fibrosis Association. On this day you can donate R10.00 for a sticker and wear jeans at your school or workplace to support the cause. The theme of the campaign is “Breathing Life Into The Future”.

Schools may want to consider using Cystic Fibrosis as a topic for a biology project, and we would be willing to provide sources of information.

The main organ affected by this genetic disorder is the lungs. We are asking the public to give generously for this event so that those affected will continue to “breathe easy” for many years into the future and enjoy quality of life. It is important to be aware of the symptoms of Cystic Fibrosis, as early diagnosis can prevent complications and premature death.

Although Cystic Fibrosis (CF) is a condition that a child is born with, it is all too often diagnosed only later in life when lung damage has already taken place. Surprisingly CF is one of the most common inherited disorders and can affect a family with no previous history of CF. In early childhood, symptoms of CF are similar to other childhood problems such as asthma, stomach ache, malnutrition & even TB, often leading to misdiagnosis. Symptoms to specifically look out for are a persistent cough, frequent lung infections, weight loss, bowel problems and salty tasting skin.

Currently there is no cure and those with CF ultimately have their lives cut short due to ongoing infections and, ultimately, lung failure. On the positive side, with earlier diagnosis and improved treatment, many adults with CF are now living into their thirties, forties and beyond – leading active and fulfilling lives.

The first CF Genes Day was held in South Africa in 2010 and over the years the amount of people involved has increased significantly. Funds raised will be used to promote early diagnosis and provide proper treatment for all those affected by this disorder.

For more information, please visit our website at www.sacfa.org.za. There is also a Facebook group to stay close to news and events, simply follow the link on our website to find it. Please see our banking details on the page that follows

Raise Awareness for Cystic Fibrosis (CF)

 

Mail & Guardian

Unique Charlotte Maxeke hospital ward faces closure

It is a beacon of hope, yet the state’s cystic fibrosis unit at the Charlotte Maxeke Johannesburg Academic Hospital might be closed.

» Read More

Financial Mail

SA’s unsung killer

Cystic fibrosis, traditionally regarded as a “white” disease in SA, is proving to be no respecter of colour. Instead of the few dozen patients formerly believed to suffer from the inherited chronic disease, doctors now believe numbers could run into thousands – most of them undiagnosed.

The Times

Genetic test is a useful tool

Genetic testing is a human right, not a luxury,” boasts Counsyl, the company behind the “Universal genetic test”, due to launch this month in the UK. The test reveals whether prospective parents are carrying mutant genes for 109 recessive genetic disorders, including conditions such as cystic fibrosis and sickle-cell anaemia.

One in 25 Britons carries the faulty gene that causes cystic fibrosis. Few ever discover their carrier status, but most of those that do will learn it through having a child with the disease.

For the first time, those planning parenthood can send a sweeping spotlight through the backyard of their DNA and seek out lurking genes that pose a risk to their future child’s health.

For most, the Counsyl test will reveal the unremarkable: that combining your DNA with your partner’s poses no identifiable risk. For one in 200 couples the test could mean the difference between a healthy child and one with a life-threatening illness.

The launch of Counsyl undoubtedly will resurrect the “designer baby” debate. In reality, the test is a useful tool that gives couples the chance to prevent avoidable diseases. And at £700 per screening, the Counsyl test is, in any case, likely to remain a luxury rather than a right for the foreseeable future. London, February 8.

© The Times, South Africa

Eastern Province Herald

Off to World Transplant Games

After gaining a new lease on life following organ transplants, two Eastern Cape women are jetting off to Australia this week to represent South Africa in the World Transplant Games. The games for transplant athletes, geared to increase organ-donation awareness, will be held from Saturday until August 30. Alice Vosloo, of Summerstrand in Port Elizabeth, said she was excited about competing for the first time. Vosloo, 24, received both her lungs in an organ transplant 19 months ago.

“I will be competing in the squash and the 3km walk race. I am very excited. During the last games two years ago, I was still on the waiting list for my lungs,” she said.

Vosloo said she had suffered from cystic fibrosis – a genetic disease – from birth, which weakened her lungs. She said she felt like a new person after her operation.

“It was really great. It felt wonderful being able to breath properly for the first time. We only receive basic information about our donors. I know that he was in his early forties.”

The former Pearson High School pupil has trained hard for the games and expects South Africa to do well.

“We are the fifth largest team at the games this year. I know we will do very well.”

Vosloo said she was especially thankful to her mother, Rene, and sister, Chrislie, who supported her during her illness and for her attempt at the World Transplant Games.

Heilie Uys, 57, who received a kidney five years ago, said she would be competing in her third World Transplant Games, which takes place every two years.

“In 2005 in Canada, I got gold for golf and gold for the shot put event. In 2007 in Canada, I received silver and gold again, and this year I hope to take gold once more,” said the St Francis Bay resident.

Uys lost one kidney due to infection in 1994 and had to go on dialysis until her transplant.

“I have always been a sporty person, even at school where I competed in track and field events. However, golf is my major game.”

Uys said organisers had advised athletes to go on the anti-swine flu medication Tamiflu as a preventative measure. “As people who have received organs, our immune systems have been weakened so as not to reject the new organ. Low immune systems put us especially at risk, but organisers have set up an incredible medical facility at the event.”

Uys said more than 50 countries were expected to compete, with almost 2000 competitors. “People from all over the world who have received all kinds of transplants – from liver, kidney and lungs to hearts and even pancreases – compete. Ages range from as young as five to 70 and older. We have a golfer from Ireland who is already in the mid-seventies.”

She said athletes competed in a range of sports, ranging from track and field events to tenpin bowling, swimming and tennis. “I think the games are wonderful because it is a celebration of life and it makes one feel strong again.

“Every year you look for people who you have met in previous years, but it is sad when you hear that some have passed away. As people who have received organ transplants, we have shorter life spans because the transplants do not last forever. They tell you that you have between eight and 10 years. But I know someone who has lasted 27 years now.”

She said the games grew bigger and bigger every year, and despite South Africa only carrying out about 300 organ transplants a year, excluding corneas, more and more people were opening up to the thought of becoming organ donors.

Uys said her husband, Willie Uys, who is the chairman of the South African Transplant Sports Association, would be presenting a bid at the games in Australia for South Africa to host the 2013 World Transplant Games.

“I think at the moment we are competing against Japan for the games, so there is a very good chance that we will get it.”

© Eastern Province Herald, South Africa

The Times

Blogging with new lungs a breeze for Alice

Alice has a lot in common with other 24-year-olds: she is a Grey’s Anatomy fan, reads avidly and is regularly online and connected. The difference is that she is recovering from a seven-hour double lung transplant operation just over a month ago.

Alice was diagnosed with cystic fibrosis when she was two but the disease did not become unmanageable until she turned 21. Cystic fibrosis is a hereditary disease that affects the digestive system and the lungs.

Because of an accumulation of mucus, Alice’s lungs became a hotbed of infection and her lung function plummeted to 20percent.

She said: “Walking up one flight of stairs at sea level was too hard.”

Her life changed dramatically. She was forced to give up studying for an honours degree in accounting because she was too ill to attend lectures.

“I couldn’t go out with my friends either.”

She had to endure physiotherapy three times a week, nebulisation and doses of antibiotics.

She was increasingly housebound as she became ever more dependent on her oxygen machine.

Alone at home, she researched her condition online and followed the blogs of other cystic fibrosis sufferers.

Inspired by a blog by a sufferer in the UK (www.pinkandsmiley.blogspot.com), Alice started her own blog.

She said: “The blog created a sense of community. I didn’t feel so alone.”

Through research and interaction with other bloggers, she learned a lot about lung transplants.

Rene Vosloo, her mother, said doctors in South Africa are reluctant to refer patients for lung transplants because the operation is risky. But Alice was determined to have the surgery.

After a visit to Paul Williams, transplant physician at Milpark Hospital, in Johannesburg, Alice was put on a waiting list for new lungs in May.

Williams said there is a risk of the body rejecting the new lungs, but if the operation is successful the patient can live a long and happy life.

On January 21, at 11.30pm, Alice received the call she’d been longing for – her lungs were waiting.

She and her mother flew from Port Elizabeth to Johannesburg the next day, and at 4.30pm the same day Alice was on the operating table.

She had gained a following through her blog. Her younger sister filed updates on the progress of the transplant operation.

Rene said the support and prayers of the online community were overwhelming.

She looked at her daughter and said: “It’s nothing but a miracle. Her hands used to be blue and her face grey. I used to be able to identify Alice in a shopping centre by her cough.”

Alice said: “I never had normal lung function in my life before.”

Her blog has been nominated for an award. “The nomination will create awareness about cystic fibrosis and donating organs.”

Read Alice’s blog at http://livinglifebreathlessly.blogspot.com/.

For information about the Organ Donor Foundation, visit http://www.odf.org.za/.

© The Times, South Africa