Thursday, 26 April 2018

Every year, we get together for the fun walk run to raise the awareness of Cystic Fibrosis [CF]. We look forward to it and with the anticipation it brings we get excited about it. It truly has been a fun event that continues to grow. 

Walking recently and encountering some uphill terrain, it made those of us walking breathe a bit more heavily, our breathing was a bit more laboured as we trudged along. It was then the thought hit me...

What is it like for someone with CF to not be doing any kind of activity and they experience laboured breathing? Someone with CF has to get their chest tapped, take expensive medications, and seek medical treatment for something that should come to them normally. Yet while they are on dry land, they feel as if they're drowning. 

There are a number of people in Barbados who have CF who for them trying to grasp a breath, get nutrients from their food, and taking a buffet of medication has been and continued to be their daily routine. 

Thankfully, one of our eldest sufferers is progressing through school and we have recognized that soon they will enter college/workforce. The challenges then change since while growing it took the salaries of two parents and supportive insurance companies to keep them alive, while barely making ends meet. That changes as they enter the workforce, parents retire/age or just are unable to work any longer. How can we ensure that this CF sufferer has a quality of life where their healthcare is not forced into a state of compromise to CF which is deadly? 

When you walk/run this year, encourage others to participate. Can each one bring at least one? Even though we will walk/run, see old friends, meet new acquaintances, we must keep the opportunity to build awareness in the forefront of what we do. 

We are The Cystic Fibrosis Foundation of Barbados, taking on the life-changing experiences of living with CF. We intend to remain committed to what we do since we are Aware to Care! 

Please register early and encourage others to do the same. Let's make this the biggest one ever on July 7, 2018. Details are on the website. and within social media. 

Thursday, 12 April 2018

Champions in the fight against CF

When the Turton's first came into contact with Cystic Fibrosis [CF], they were eventually referred to the USA in order to get the medical assistance that was not available here in Barbados nor anywhere within the Caribbean region. Over the years, their family has become well known to their medical team at the Cohen Children's Hospital NY. 
The Turtons with their medical team at Cohen Children's Hospital

A phenomenal group, there willingness extended to visiting Barbados to help build the awareness of the illness. Educating us in Barbados as to what we should look for and where professional help may be sought. They even interacted with the medical fraternity here through lectures at various venues, enabling doctors to be able to identify the traits within patients so that they can be recommended for testing to confirm whether or not they have CF. 

Through our awareness programs, there are a few others who have been able to identify that they were impacted. Also our organization, The Cystic Fibrosis Foundation of Barbados, has become the go to entity for international travellers who wish to visit the island and in their planning want to know what opportunities for care are existent locally should they ever have an episode requiring care. 

The team at Cohen Children's Hospital have been instrumental in putting us in contact with The Cystic Fibrosis Foundation who have been quite instrumental in assisting us locally at The Cystic Fibrosis Foundation of Barbados  in becoming established to assist those within Barbados and indeed the wider Caribbean in obtaining care for their loved ones. 

To the team of Cohen's Children Hospital, not only The Turton's, but Barbados, thanks you for your care, professionalism , friendships, and accommodation in all that you have done to improve the lives of children from across the globe. Your insights and example have enabled us to become a respected entity within Barbados that offers assistance, not only to children, but to everyone who suffers from the challenges associated with CF. We remain commited to assisting those commited with CF to realize a better standard of living as they cope with the illness medically. Since interacting with you and others who have CF, we have seen the awareness grow. We still remain commited to having a regional medical team develop who can provide the care and reassurance given the example you have set. We say, a heartfelt thank you.