Independence for All: Ensuring a Brighter Future for Those with Cystic Fibrosis

 

On this Independence Day, let's reflect on the true meaning of independence. For many, it signifies freedom from constraints, the ability to pursue dreams, and the power to shape one's destiny. However, for individuals living with Cystic Fibrosis (CF), this ideal often remains elusive.

What can we do to empower those with CF and bring them closer to true independence?

Government Programs and Initiatives

• Expanded Healthcare Access: Implementing comprehensive healthcare plans that cover the specialized treatments and medications required for CF patients.
• Financial Assistance: Providing subsidies or grants to help offset the high costs of managing CF, including medications, therapies, and medical equipment.
• Disability Support Services: Establishing accessible infrastructure and support services to enable CF patients to live independently, such as home healthcare, transportation assistance, and job training programs.

Community and Organizational Support

• Cystic Fibrosis Organizations: Collaborating with local and international CF organizations to raise awareness, fund research, and provide support services to patients and their families.
• Public Awareness Campaigns: Educating the public about CF, dispelling misconceptions, and fostering empathy and understanding.
• Volunteer Programs: Encouraging community members to volunteer their time to support CF initiatives, such as fundraising events, patient advocacy, and mentoring programs.

International Linkages and Tourism

• Accessible Tourism: Developing policies and guidelines to ensure that tourist destinations are accessible to individuals with disabilities, including those with CF.
• Medical Tourism: Promoting the island as a destination for medical tourism, particularly for CF patients seeking specialized care and treatments.
• International Collaborations: Partnering with international healthcare institutions and researchers to advance CF research and treatment.

Local Medical Expertise

• Specialized Care: Investing in training and resources to develop local medical teams with expertise in diagnosing, treating, and managing CF.
• State-of-the-Art Facilities: Establish specialised CF clinics with the latest technology and medications.
• Telemedicine Services: Utilizing telemedicine to connect patients with remote specialists and provide timely consultations and monitoring.

By taking these steps, we can work towards a future where individuals with CF can live whole, independent lives, free from the burdens of their condition. Let's make this Independence Day a catalyst for change and a beacon of hope for those affected by Cystic Fibrosis.

Richard Blades - Former Vice-President of CFFB

CF - The Disease that doesn't acknowledge others

 

One thing that this pandemic teaches is that whatever comes up including a pandemic, CF will say these three words: Hold my beer. 

It would then begin to show its might as to who's really at the head of the "food chain". Cystic Fibrosis [CF] will not play second fiddle to anyone, including COVID-19. 

CF is not as widely known as COVID has become, yet it maintains its status as one of the celebrities in the disease world. It's global in reach, it impacts people of various ages, it can significantly impact families and their considerations for just about everything, and it's EXPENSIVE to treat; at least here in the Caribbean where there are no resources allocated to it really. 

CF is in a class of its own. It doesn't compromise on its standards as a disease. It remains virtually unstoppable. It still is a serious illness. It still impacts entire families though it may be just one member who has the actual illness. School/work life is impacted on the part of the sufferer as well as those who interact with them. 

The expenses of caring for someone with CF are staggering. Parents often feel the brunt of the expenses until the student reaches around 18 years old or just beyond. The saga expands to show this student in post-school life can't support themselves given the demands of the workforce. 

Finding work that pays them the required amounts given their limited experiences is impossible; the allocation of unprecedented sick days is slim to none; establishing their own business that supports them immediately is at best stressful due to a variety of factors too numerous for this article, and insurance companies withhold support as they are no longer on their parents' policies but must now obtain their own.

 The limited lifespan of CF sufferers is a cause for concern. Given that COVID-19 negatively impacts those with co-morbidities; can you imagine those who catch it one way or another? The impacts for them intensify and the outlook doesn't look pretty. Their ability to breathe is further impacted negatively. 

• Without medication and medical care, the life of a person suffering from CF can be severely shortened. 
• Medications run around US$6000 monthly 
• Doctor visits are not cheap since no one in Barbados treats it, travel is required to obtain treatment for the sufferer. 
• Our foundation can help once we have the resource, but they too are significantly reduced given the suppressed market within which we are operating. 

We need more volunteers. People who are seriously committed to serve in a variety of areas. The demands of CF never stop. Would you help us today? Visit our presence and identify who you would like to assist and from when. It can be from a standpoint of time and money or a combination of both. 

The money would be things like sponsorships, donations, provision of fundraiser programs and ideas that facilitate the raising of significant sums while still being safe. Two people with CF can't even be in the same building. 

Time, we are looking for volunteers, researchers, planners, support team members, runners, writers, and a whole lot more. Make contact via our website cfbarbados.org as to how you would like to assist. We welcome your input. 

We thank you for your support over the years and look forward to your input going forward. Have an amazing day wherever you are in the world. 

Cystic Fibrosis - The Post COVID-19 Coping

 

If the graphic above is any thing to go by, then everyone in Barbados is experiencing the rough waters brought about by COVID-19. All activities of charities and other organizations have been put into a tail spin. The recovery process will be slow and painful. Yet, with all that is going on in our environment, we have to be more innovative and creative in order to maintain so me semblance of sustainability. 

In coping, we have to be so very careful to ensure that the needs of those who suffer with CF are met. Yet we are cognizant that everyone is under strain financially, mentally, and emotionally as the impact of this environment bears heavily on us as a people. 

The only thing that COVID-19 has not stopped is the bills; in particular medical bills. Though CF sufferers are restricted to travel to doctors not available on the island. The remote doctor visits and expensive medications are still very much a factor of daily living for someone with CF. They have to practice extra caution, over and above what others do. No they are not cowards for wearing masks, but for them the reality of death for the CF sufferer becomes more paramount. 

Our environment puts additional restrictions on our already limited interactions for fundraising and building awareness in the general public. Therefore in the coming weeks we will be introducing new formats that allow the public to interact with us. 

We need volunteers that can do research, spearhead various activities, interact with the board, and assist in the provision of accountability to those who suffer CF. We just cannot forget them. 

We are the Cystic Fibrosis Foundation of Barbados and we are preparing to cope with the Post-COVID-19 environment. 

Facing the future - when one has CF

Sometimes we can become so occupied with the present that we don't look towards the future until it is right upon us. This is a situation that can easily happen when one is focused on keeping young children with Cystic Fibrosis [CF] alive.

We do our duty as parents and loved ones with the activities of raising funds and awareness to keep the young people alive, yet there are some considerations that can be easily overlooked. What do I mean? Here are a few:

• If we fulfill our tasks well, they may just live to see adulthood by the grace of God; 
• As we the care provider age, we will retire once we are alive; 
• Our children, though affected in some cases with absences from school, will embark on the world of work, God willing; 
• Their earning capacity may be nowhere near what we are parents provided while they were growing up; 
• Hopefully, they will fulfill their education, however, that usually comes with students loans to repay by already cash strapped families;
• Whatever career they embark upon will be impacted by their illnesses on occasion, not everyone's geared for entrepreneurship though it would be nice to totally command one's working arrangements. 
• Insurance to maintain someone with CF when they become adults would have to be researched, and the premiums would have to be affordable so that they can be met by the CF sufferer. 
• Will companies in Barbados, adopt policies to enable them to adequately hire someone affected with CF once they possess the requisite skills and abilities;
• We can go on, as there seem to be more questions than answers. 

I saw this article [click here]  which may give some insights as to how employer/employees can foster relationships that are win/win, and it would take mature minds to implement similar policies. One thing is certain, we at The Cystic Fibrosis Foundation of Barbados can never stop raising the bar in making people aware of this illness. 

Even as we begin 2019, and thank everyone for the support we were given in the past, we have recognized that we haven't even really scratched the future with regards to building awareness. This is especially when we consider the future and how it needs to be faced with the options presented. 

Though we put in the work, we may not be totally ready, but we have to readily equip our young CF sufferers to earn a living for themselves in their years to come, so that as they cope with their health issues, they can still have some experiences like others who lead reasonably normal lives without health issues. 

We are "Aware to care"! 

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. 

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. 

Funds, Fundraising, and Funding needs

Talk about a demand that's exponential! We've grown well beyond this core group of initial volunteers.

Have you ever wondered why is it that funds are never enough, requiring fundraising to be ongoing, and the funding needs seem to be more than either of the first two can adequately cover?

If you're going at the frenetic pace like we are at the Cystic Fibrosis Foundation of Barbados [Cffb], you seldom have the time to pause and ponder. Currently, our funds don't even cover the basic needs of the foundation, which are to provide adequate funding for those affected with Cystic Fibrosis [CF] to get adequate medical treatment.

To give a bit of background, we have so much gratitude for US Based Cystic Fibrosis Foundation for the assistance they gave us when we first started out. The gave selflessly of their information, support and guidance that we were able to become established quite quickly and as a young charity, become well organized with proper structure.

In our few short years, we were able to accomplish quite a bit to assist those on the island that were seeking care. Whereas our US counterparts are "Adding tomorrows", here in Barbados, we are "Aware to Care"; building awareness within the country and indeed the region with our information about an illness that so few knew about, even though there were others who had it over the years.

In short order, we need funds.

Our fundraising efforts included gala dinners with silent auctions, the walk/run which has now become an annual event. We did awareness programs with the medical fraternity when we invited our US-based supporters to come in and assist with the sharing of the information. Still, we feel there's a shortfall. We feel as if we haven't done enough. Why? It's because this is an illness that is expensive, it mutates, and the learning curve is steep. We need to raise the bar.

Others may have this challenge as well, and we need to make our needs known. Our fundraising needs are great and need to continue with the ever increasing costs of medication and treatments which are not available on our shores of Barbados.

Our funding needs include:

• the need to support the families who are affected by CF to get medical care and medicine for their family members who are ill with CF. 
• the needs to have an established secretariat from where we can function on a permanent basis where the public can better interact with us and vice versa. 
• administration of our organization on a permanent basis since CF does not take a break, neither should the organization. We need admin equipment, including computers, telecommunications, furniture, stationery, and the list can go on. 
• the ability to contribute our share to finding a cure to the international medical research programs. 
• the training of doctors in the special field of pediatric pulmonology so that we can reduce the need to travel overseas to seek medical care. The medication is still an overseas cost, but at least the provision of on-island medical care can eliminate/significantly reduce the foreign exchange pressure the families face financially for not only the person affected by CF, but those who must accompany them. 
• the training of volunteers can be usually met with venue rental fees. Sometimes we can negotiate facilitators to donate their time, but it is not always possible. There are areas where we lack internal competence where we must seek professional help, e.g. audit reviews and other types of programs which enable us to maintain a presence in the public domain.

As usual, volunteers are a must, as there are a number of programs that we would like to implement but are short of manpower. So our topic is one that tells you. our needs expand exponentially; often faster than our ability to meet them.