When Life Breaks Down into Pieces

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Brian Callanan
Guatemala Flag w logo

I first learned about the dire situation of cystic fibrosis (CF) in Guatemala when Dr. Andrew Colin of the University of Miami asked the South Florida collaboration of CF centers to include the article below in the quarterly patient newsletter. This situation struck me as painful and scary to even consider a life in which common treatments of CF could not be accessed for financial or other reasons. The fact that so few patients ever live past the age of 18 is just horrific in a world where such advanced treatments exist just beyond the geographic horizon. The challenge of this struggle caused me to reach out to the CF Guatemala Association and to take the next step of getting involved and doing what I can to make a difference, no matter how big or small.

This Wednesday, August 29th, I will be heading to Guatemala to participate in an an international CF conference involving several CF physicians from different locations. I will be speaking about the importance of mental health and its connection to physical health, with exercise being the conduit between the two. I have made attempts to contact the office of California Representative Norma Torres, who was born in Guatemala, to ask for assistance in navigating channels to eventually meet with the Guatemalan Ministry of Health to educate and advocate for patients that have literally NOTHING. Unfortunately, my attempts have gone unanswered, but especially now having a growing presence in California, we will continue with our efforts (and welcome any assistance).

However, in preparation for my journey to this country to meet with both physicians and families of patients, I want to share with you the article from the founders of The Guatemalan Association of Cystic Fibrosis. I will be sure to follow up with photos and experience in understanding more of the situation and needs going forward.

 

Patricia Morales
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CF Guatemala Association logo
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Ana Maria Cordova
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When Life Breaks Down into Pieces… (written May 2017)
By Patricia Morales (President, pictured left) and Ana Maria Córdova (Vice-president, pictured right)
The Guatemalan Association of Cystic Fibrosis

The Guatemalan Association of Cystic Fibrosis arises, as most associations in our country, as a result of a life-threatening experience and when uncertainty prevails. Families and members of the association have a common story and share the same feelings, fears and hopes. The stories that are told about the day they first heard the diagnosis of one - and sometimes more than one - of their children are, in all cases, devastating. As any family, these families have written the stories of their lives with chapters of a great variety of scenarios and characters: Each family with its own narrative of varying emotions and feelings of different intensity; each with its own projects and sense of life; all of which suddenly is interrupted with the start of a new chapter, and from which all stories start having an odd similarity.

9 Year Old with CF
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Suddenly, after a sequence of continued visits to different physicians and specialists, lab tests and constant hospital admissions, the experts start to put together the common denominators: respiratory and digestive issues; poor absorption of nutrients leading to low weight; and a very compromised immune system. It is at that point that the term cystic fibrosis is heard for the first time. A big question mark ends the previous chapter of life and this new one starts in the same way: from now on, life will no longer be the same. Anguish and fretting is part of the family’s daily life; uncertainty takes charge now and a sense of hopelessness soon emerges when families find themselves in front of a group of physicians who have not been trained to cope with the new situation, since CF was not a recognized condition in Central America. And then fear replaces uncertainty. Abruptly, day becomes dark and the walk is now to be taken in the shadows. The journey has changed and there is no other choice but to adapt and continue walking because there is no time to waste.

11 Year Old with CF
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In Guatemala, hope of life for someone with CF is not very clear yet. It seems like an equation of at least three variables; on one hand, the belief of some physicians about the little that can be done in such cases; on the other, the high cost of medicines that makes it impossible to acquire (around US $8,800) (1); and last, hope generated by physicians that have chosen to join the struggle against CF and are committed to improve the care and living conditions of patients with CF. The Guatemalan CF Association includes among its members the CF patients who have surpassed the initial survival expectations from 4 to 6 years when diagnosed, but those who also mourned the loss of children and youngsters who have not made it because of lack of appropriate medicine during crises, maintenance medicine, proper nutrition, and limited or absent access to specific respiratory therapy. 

CF Guatemala Association members
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23 Year Old with CF
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To date, according to the registries of the Association, there are 59 people living with CF (23 women and 36 men), but only one woman and four men have reached adulthood. Since the Association started its activities in 2014, 8 people (6 children and 2 adults) have passed away as consequence of the disease. A recent study undertaken in our country showed that 95% of people living with CF suffer chronic malnutrition. (2) This impairs immunity and sets our patients up to higher risk and severity of common viruses and bacteria, a serious threat to consequent complication.

In Guatemala, just over half of people living with CF are assisted by Social Security, a third by the National Health System, and the remaining (13.5%) are assisted through Private Health Systems. The number of patients diagnosed with CF and who have been engaged in care in any of these systems has tripled in the two years of operation of the CF association, suggesting expansion of recognition and knowledge of the disease and therefore a higher rate of diagnosis, which eventually should translate to improvement in the quality of lives of these patients and longer life expectancy, subject to access to all the necessary medications and improved treatment strategies.

The recently formed CF Association has made great efforts to inform people with CF as well as expand the recognition of the condition in the overall population, by education on the common symptoms of the disease and the importance of an early diagnose. Emphasis has been placed on understanding and acceptance of the diagnosis with its medical, social, economic, family, and psychological implications. Educational activities have been held on life with CF, the importance of being consistent with maintenance medications and regimens, crisis management, and the crucial role of nutrition in the life of people living with, including preparation of highly nutritional diets and supplements, and proper enzyme dosing. 

The serendipitous visit of a number of US pulmonary experts to the national pediatric meetings in Guatemala opened a forum of discussion and a channel of communication and advice with previously absent expert resources. These include Drs. Andrew Colin from University of Miami (pictured left below), Anastassios Koumbourlis from George Washington University in Washington, DC (pictured right below), and Mikhail Kazachkov from New York University (NYU).  A local meeting with discussion and mentoring has created an avenue of communication between Guatemalan physicians and these consultants to clarify doubts and improve the quality of care of people living with CF in Guatemala. 

Drs Colin and Koumbourlis at CF Guatemala Association
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Currently the Association has the challenge to identify routes to bring assistance and donations from other countries, which is crucial to developing a better environment, and trying to reduce the rate of hospitalizations for each patient and improving life expectancy. Local efforts by the CF Association to expand funding of medication and equipment by the Ministry of Public Health and Social Assistance are meeting with barriers, including administrative impediments such as importation regulations. Therefore, the Association is still engaged in the continuous search for the proper means to bring medicine and resources to people living with CF to prevent serious and rapid worsening of their health and lives.

12 Year Old with CF
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In the midst of this gloom, it is worth and necessary to highlight the companionship and solidarity among parents, caregivers and relatives who lightens up this daily struggle, as well as the effort, work and involvement of physicians who put heart and soul to assist people living with CF in spite of the great limitations they face.

17 Year Old with CF
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The final chapter has not yet been written; there are still many things going on… We do hope that Guatemala, with the support of foreigners and friends in other countries, will be able to write chapters of hope about people living with CF having access to the latest generation medicine and treatments that are currently leading to better outcomes in other countries, receiving proper nutrition and respiratory therapy according to their individual needs, advice and assistance provided by updated professionals and different involved specialists in proper facilities in accordance with worldwide CF protocols, the provision of psychological care which is important to appropriately face changes and challenges dictated by CF, and learning how to cope with them and adapt to what it deeply means to live each day with cystic fibrosis. 

 

 

Data source: Guatemalan CF Association (Asociación Guatemalteca de Fibrosis Quística)
Contact: fibrosisquisticaguatemala@gmail.com, mobile (502) 5750 5059, Patricia Morales; and (502) 5510 4488, Ana María Córdova.  Follow us on Facebook as Fibrosis Quística Guatemala
Documents
1. Quística, Asociación Guatemalteca de Fibrosis. Registry of the Asociación, Medicine Cost. Guatemala : s.n., 2016.
2. Rodriguez, Monica. Development of a nutritional duige for people living with Cystic Fibrosis in Guatemala. Guatemala : s.n., 2015.

 

Help Others Live STROnger and LOnger! - #STROLO

                                                                                             


Brian cycling
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Brian Callanan is currently 42-years-old, and was diagnosed with cystic fibrosis at birth.  He is the Founder and Executive Director of the CFLF, and practices an active lifestyle primarily through swimming and cycling on and off road, but also enjoys snowboarding, hiking, sailing and rock-climbing. You may email him directly at brian@cflf.org.

 

                            

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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