Urgently requesting guidance / assistance for my 14-year-old daughter, who has been diagnosed with cystic fibrosis since the age of 6. We live in Jamaica, where there is currently no specialized cystic fibrosis care available.
There is very little care for her condition as it's not a popular condition. Because if this there are no medications for CF available in Jamaica, although the doctors try their best, they are just not equipped. It has been a challenge to even get her digestive enzymes. I'm so confused and feel so alone. I have no source of information outside of this group for first-hand knowledge on how to tackle the different issues she has.
At this time, my daughter is hospitalized with a severe chest infection and low oxygen levels. Her condition has significantly worsened, and she has also developed scoliosis as a complication of her illness. In addition, she has experienced significant weight loss, which is very concerning.
Her current treatment is extremely limited and includes Ventolin (salbutamol), albuterol inhalers, and Bromhexine. She is currently on antibiotics and oxygen therapy.
She does not have consistent access to a nebulizer or specialized therapies commonly used in cystic fibrosis care. Follow-up care is also very limited, with clinic visits only every six months.
I am deeply concerned that without access to proper cystic fibrosis management—including appropriate medications, airway clearance support, nutritional guidance, and specialist oversight—her condition will continue to deteriorate.
I am reaching out to respectfully request any assistance, including:
Guidance on accessing appropriate cystic fibrosis care
Support in obtaining essential medications or equipment (such as a nebulizer)
Connection to specialists (including telemedicine options)
Information on any programs available for patients in countries with limited CF resources
I am willing to provide any additional medical records or documentation required.