According to a story from Mirror, a group of seven women who met each other through online support groups recently met in person for the first time. The women in question are Josie Stewart, 25, George Compton, 28, Charlotte Davies, 24, Ashley Harris Moore, 36, Sharon Brennan, 37, Holly van Geffen, 26, and Libby Clare, 22. All of these women have cystic fibrosis and have had to get lung transplants in order to survive.
About Cystic Fibrosis
Cystic fibrosis is a type of genetic disorder which can have impacts throughout the body, but it is most characterized by the build up of abnormally thick, sticky mucus in the lungs. This mucus becomes a fertile breeding ground and habitat for potentially infectious bacteria. Many patients must take antibiotics for much of their lives. This disorder is caused by mutations of the CFTR gene. Symptoms of cystic fibrosis include progressive decline in lung function, lung and sinus infections, coughing up mucus, fatty stool, poor growth, infertility in males, clubbed digits, and digestive problems. Treatment includes antibiotics and medications or procedures intended to maintain lung function. Lung transplant is an option when lung function declines severely. Life expectancy ranges into the 40s and 50s with good care. To learn more about cystic fibrosis, click here.
Brought Together By Rare Disease
All of the women share somewhat similar stories. Born with cystic fibrosis, the women were able to live fairly normal lives for a number of years, but somewhere along the way, their lung function took a noticeable turn for the worse, and eventually they had to get lung transplants. Holly says that one of the worst feelings was seeing healthy peers grow up and move on while she had to put life on hold to face her illness.
A Special Bond
This is why the women all grew to support each other, because they were able to relate to one another in a way that a healthy person could not. The seven women first met in a Facebook support group for patients with cystic fibrosis, and they eventually created a WhatsApp group that they began to use.
The friends had wanted to meet up earlier, but patients are discouraged from doing so until after getting a transplant because of the potential risk of infecting one another. The women encourage readers to support Share Your Wishes, an organization which spreads awareness about organ donation.
