#livingwithCfinindia #cysticfibrosis #arouba #letspledgetodefeatit #lovelife #bepositive
Cystic fibrosis, or CF, is an inherited chronic disease that affects the lungs and digestive system. Approximately 70,000 worldwide are living with the disease. And since I am one among them, I have first hand experience of the drugs used on us. We are 12 month- 365 days on antibiotics. Some days the strong ones and the other days on the lighter ones.
I loved every day of my life since I got my Dog-Jigar in my life. He helped me improve. I started climbing stairs because of him and he became my constant companion. He would be my bed side when I couldn’t get up from my bed and walk slowly with me when I couldn’t breathe well while walking. But then I started shouting at him as every time when he would bark- it would pinch my in my left ear. I started yelling at him and asking him to keep quiet as I thought because of his high volume, I have started having a problems in my ear.
One day I visited my Pulmonologist and while giving my present symptoms, I told him how my dog is making me deaf. He immediately stoped my antibiotic and told me its not the dog, its your medicine called Azithral 250mg which I was on since 5 years now. He also mentioned how we doctors wouldn’t get to know that it has affected you until and unless you don’t tell us as every body os different and responds differently.
After I got home and checked online I found a new study for the first time reveals antibiotics used over a long time significantly increases the risk of permanent hearing loss in these patients.
“The study, to be published Feb. 23 in the Journal of Cystic Fibrosis, suggests physicians who treat patients with cystic fibrosis may be able to consider alternative strategies for treating the symptoms of respiratory infections associated with CF, especially if patients are responsive to different classes of antibiotics. New medications are emerging that have shown a reduced toxic effect on both the kidneys and ears of these patients, while effectively treating infections.”
“People don’t realize the trauma of hearing loss until after they’ve lost it,” said senior author Peter Steyger, Ph.D., a professor of otolaryngology/head and neck surgery in the OHSU School of Medicine who lost hearing as a child after being treated with antibiotics for a case of meningitis at age 14 months. “Helen Keller said, ‘Blindness separates people from things; deafness separates people from people.’ It can lead to isolation, depression and cognitive decline.”
I would request the patients and parents whose children suffer from Cf- if your child is on any kind of antibiotic, you should always ask your physician its long term side affects. Which is very much necessary. I stopped Azithromycin for sometime until my hearing and the pinching I used to get in my ear was fine. There are alternative medicines which we can use. Its just to research and talk to your doctor.
And until and unless you don’t inform your doctor about your symptoms, they wont get to know whats happening. Feel free and inform them.
Now even my dog barks, I am perfectly alright with it.
“This information will allow both the patient and the physician to discuss possible modifications to the treatment regimen, particularly if an alternative approach is or becomes available,” according to the study.
Patients with cystic fibrosis are living longer, raising the importance of maintaining their quality of life over a longer period of time and lets do our bit in spreading the awareness.
:-) A seeking one.
By profession, a Wellness Coach for Physical and Mental Health, Certified Yoga and Pilates Therapist, Grand Master in Meditation, Traveller and a Blogger