May is Cystic Fibrosis awareness month, and once again I’ve done 31 Days of Cystic Fibrosis on Facebook and Instagram.
In 2019 I concentrated on a hidden side of CF and profiled people who are impacted by CF.

May 29th – May 31th 2019

CF has always been a part of Tanya Farnell Brown’s life. Her two younger sisters, Lee-Anne and Narelle, were diagnosed with CF shortly after they were born. “Growing up, it seemed like we were always at the hospital. Chest infections and coughing was the norm in our house. I was often sick, but I noticed both the girls doing things I didn’t. They had this smelly powdery stuff called Vicase that they’d mix with Apple sauce at mealtimes, and physio and nebs too. Lappa or Judy would come to the house to help mum with their physio. They’d take turns. Do physio then nebs. No one ever wanted to be first.”

When Tanya was 13, she started to notice the difference in Lee-Anne’s health. “Narelle was always the healthier of the two and never had any hospital stays, whereas Lee-Anne’s health was up and down; she was in and out of hospital. Hospital stays started to became more frequent.”

“We lost Lee-Anne at the age of 18. She had a low lung function for a long time, along with other issues. This time her kidneys started to fail. Treatment wasn’t successful, and there was talk of her going over east for transplant, as it couldn’t be done here in WA at that time. Sadly it was too late, and she became too ill to be able to travel there for it.”

“Narelle is 43 now and Mum to a 13 year-old son. She is one of the strongest and bravest women I know. She had the opportunity to be a part of the Orkambi trials, and it is now part of her treatment plan. I’m happy to know it seems to be working for her. She is stable at the moment and hasn’t had to have IV treatments for over a year!”

“We were devastated to lose my sister Lee-Anne. And I definitely don’t want to lose another sister.”

In 1998 Tanya gave birth to her son, Sam. “Sam was a happy, healthy baby showing no health concerns. For some reason, CF was in the back of my mind. I looked out for signs. Over the summer months, I noticed a saltiness to his skin. Not just his forehead but his feet. I thought maybe I was overthinking it. Was I making something out of nothing? It could be nothing, but it still stayed in my head. Sam was a good eater gobbled up everything. But I felt I wanted to go to the hospital and have him checked, for my piece of mind.”

The diagnosis was soon confirmed. Like Tanya’s younger sisters, Sam too had CF. “I was given info packs to read and told ‘Now go home and enjoy him for as long as you have him. Someone will be in touch for further testing.’ This, of course, was emotionally overwhelming. I’d lost my sister, Lee-Anne, just 6 years before from CF.”

The daily routine of medications, nebs and physio started again, but this time, it was Tanya’s responsibility. “My main aim was prevention – to prevent his exposure to illness. I became super vigilant. I was always listening to his breathing and looking for signs that might show he was coming down with something. I started screening visitors. I’d ask them all if they were sick before they came over. Or before we went to theirs. I quickly learnt that other people’s perceptions of sick are definitely different from mine. They don’t realise how the risk of a simple cold to them could end up being life threatening to another.”

“I was strict with a physio routine. As a baby laying on our laps, it was nice when Sam stayed still. We had Judy as a physio aid for us from CFWA. Judy had also done Lee-Anne and Narelle’s physio when they were younger. To me, it was like an old family member coming home.”

For Sam, hospital admissions were stressful, and doing IV treatments at home became the preferred treatment option. “Sam is now 20 and he’s not needed IV treatment for 12 years. We’ve been lucky to be able to keep his cough dry, and he’s only chesty when he has an infection.”

“I’ve learnt to take each day as it comes. Be thankful for every day that we are, in our own way, healthy and happy. Each day try to look on the good side of things and be hopeful all goes well. All the changes I’ve seen in treatments for CF and the knowledge gained through research over the years is really quite amazing. Like Orkambi. What a gift that is. It reinforces our hopes for the future.”

May is Cystic Fibrosis awareness month, and once again I’ve done 31 Days of Cystic Fibrosis on Facebook and Instagram.
In 2019 I concentrated on a hidden side of CF and profiled people who are impacted by CF.

May 24th – May 28th 2019

Claire Stubber met Ian during her first session of pre-transplant gym at the Alfred Hospital. “Like most CFs I know Ian didn’t let on that there was anything wrong with him besides a pretty nasty cough that he couldn’t hide and obviously damaged lungs. I remember his pancreatic enzymes because one of my sisters used to pull the capsule apart anddisperse the spheres as we were sitting and talking.”

“After meeting Ian, one of my sisters decided to do her Year 12 science project on Cystic Fibrosis, and so I learnt a bit more about the genetic mutations then and the physical effects that weren’t that obvious to me at the time.”

Four months after the two met, Ian received his call for transplant. “I was in shock, worried but extremely happy for him. I walked around in a fog for the entire day. When I got to the hospital the next day, one of the staff who knew us both well grabbed my hand and pulled me down two flights of stairs so I could see him in ICU. Ian was sitting up, he looked a bit swollen but very pink, and he had a huge grin on his face. Holding his warm hand was amazing. He only spent 24 hours in ICU; he boasts that was a record.”

“I visited him every day on the ward and saw how quickly he progressed, and despite a faulty epidural and other problems, he was cheerful. I think seeing the process of transplantation first hand was enormously reassuring; I was there the day he had his first and only bout of rejection, he was practically sitting on top of the heater because he was shivering from fever. There were procedures and setbacks that I witnessed that helped me to quickly put things in perspective when they later happened to me.”

Claire received her call for transplant seven months later. At the time, Ian had returned to Perth. “I came around four or five days after my transplant in the ICU, so I woke up to the news that Ian was on his way over. He spent two weeks with me, and it was lovely, I learnt then that he would love me through anything.”

On returning to Perth, Claire experienced health problems. Twelve months went by, and the cause remained mysterious. “My father (a consultant physician) suggested I go to Melbourne for help. We stayed for three months initially, but they identified the problem within days. It seemed a simple decision (apart from leaving loved ones) after that to make the move.”

“I was worried about moving to Melbourne and away from family support when I was hospitalised, but I needn’t have been, I was sick or close to dying for most of last year, and Ian just seemed to know exactly what to do and what I needed when I needed it. Ian introduced me to a world in which there could be wordless communication about how one was feeling and what one had experienced, not just between us but to others, mainly people with CF, who had similar experiences. I seemed to be always accepted as not having CF but still part of the CF community. Luckily there are few times when Ian and I are ill at the same time. I think it makes things easier; we don’t have to explain a lot of things to each other.”

“The physical effects of CF can be horrendous, and transplant does not solve them all, in Ian’s case, it has made most of them more bearable. Ian claims CF as a large part of his identity in a positive way and often points out that his various character traits do have a connection to the fact that he has CF. He showed me so many times how to deal with illness with humour. He very rarely complains. He is generous in many ways and has overcome so much that I am in awe of him.”

The generosity of two courageous families who decided to donate their loved one organs changed both their lives. Combined, the extra time Claire and Ian have been gifted equals 46 years.

Ian is a renowned Cosplay photographer, you can follow him on Instagram

May is Cystic Fibrosis awareness month, and once again I’ve done 31 Days of Cystic Fibrosis on Facebook and Instagram.
In 2019 I concentrated on a hidden side of CF and profiled people who are impacted by CF.

May 19th – May 23rd 2019

31 Days of Cystic Fibrosis. May 22
Karen De Lore – Business Development Manager, Cystic Fibrosis WA

Karen De Lore came to CFWA with some knowledge of CF, and how the disease was managed. “I felt an empathy for the CF community before I arrived, I thought working for CFWA would provide a cause I could be passionate about. And it is easy to be passionate about CF. Although CF is chronic and awful, the CF community is great.”

As Business Development Manager, Karen is responsible for both fundraising and marketing awareness of CF. “Fundraising, by its nature, also brings a lot of awareness. Both the 65 Roses campaign and Orkambi campaign were targeted towards raising awareness of the battles that families affected by CF face every day. These campaigns bring increased awareness towards understanding the challenges people with CF face in their life.” Karen said.

For people with CF, there is a huge benefit to offering services as an adjunct to hospital services. These focused services not only help relieve the burden on the hospital system; they directly improve the lives of people with CF and their families. CFWA provides additional services on top of those paid for via the Health Department contract – that’s where Karen’s role is vital. Without fundraising, CFWA can’t deliver focussed services in an effective manner.

“Working in the not-for-profit sector in this climate is challenging – asking for money from any part of corporate WA or from the community is sometimes hard – it makes it a battle to secure new funding. Sometimes people want to give money for specific purposes. However, both caring for people with CF and providing funds for research goes hand in hand. It’s no good channelling all the money to research while people are battling and need service delivery.”