Patient stories

Micaela Ramón: A Galapagos Islander

Micaela Ramón was born on Santa Cruz Island, one of the many islands that create Galapagos Islands. Her cheerful demeanor would never show that she had CF and she did not even know that she had it until the age of 13. She currently lives with her mother, her step father, and older sister and still lives on her home island. She works in her mother’s business of selling natural medication created from nature.

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Proteostasis_Therapeutics_Inc_patience_stories_Communnity_blog_stories_pictures

Growing up, Micaela had a persistent cough and was repeatedly sick. Her mother called it “the cold that never got cured.” Initially she was diagnosed with bronchitis, so she took medicine for it, but it failed. She was still coughing and at the age of 6, she had her first hemoptysis which she recounts being very scary because no one knew what to do. Doctors prescribed her any and everything to minimize her symptoms and even diagnosed her with tuberculosis, sinusitis, nasal polyps (in which she had 4 surgeries) and allergies. The doctors went even far enough to claim that her mother was crazy and was making her sick! This was certainly not the case, and sadly her mother was even slightly convinced due to the fall out occurring between her and Micaela’s father during that time. One thing was for sure, her mother was never worried about Micaela’s weight because everyone was thin in their family.

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Proteostasis_Therapeutics_Inc_patience_stories_Communnity_blog_stories_pictures

When she was 13, her mother noticed that she was sicker than normal due to having digestive issues and a cough and took her to a renown children’s hospital, Roberto Gilbert Hospital de Niños. Her doctor, Rosa Briones, informed Micaela and her mom that she had CF and would have to do a month of IV medication every year for the rest of her life, so she started it immediately. A week later, she met Anthony who had CF and he was required to do the same as her. Being new to all of this and very curious, she became friends with him and he helped her understand the disease. She joked about how they made the nurses follow them around to separate them, but they were still able to remain in close quarters when the nurses were not paying attention.

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In her third week of the IV medication, her cheeks pinked up, she became taller and gained 8 pounds. She was breathing easier and from that moment, fell in love with the hospital. However, she was only allowed to be there until she turned 18 and has been jumping from one hospital to another since. This means new doctors and she hasn’t done the month IV since age 18; Micaela is now 22.

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Proteostasis_Therapeutics_Inc_patience_stories_Communnity_blog_stories_pictures

Micaela is full of positivity and joy. Her doctor told her that she has good lung function because she loves to swim. Along with that, she is extremely patient, “takes almost everything in a good way”, and is the only person on the Galapagos Islands with CF! When Micaela was hospitalized, her mom read to her, another one of her hobbies. She enjoys the natural wonders and beauty of the Galapagos like going to the beach, visiting the farm to see tortoises, farm animals and simply walk around.

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As far as when she tells people that she has CF, the first thing that they usually say is, “you seem healthy to me.” She mentioned that in the past year, she has been more open about her condition and educating her friends and family about it. They tend to forget that she is sick, which she takes as a good thing. She values the time that she spends with her community, especially her mother and enjoys cooking with her, helping with dishes or cleaning. She cheerfully said that she’ll even sing and dance around her or they just gossip.

She recounted one of her biggest life accomplishments thus far being when she was 14. Although she was sick, she felt empowered and won a cruise around the Galapagos Islands because of her good grades! The cruise was the Endeavor ship of National Geographic. She remembers seeing the most beautiful places and enjoyed being on the water. For 7 days, “I was in heaven.”

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Having cystic fibrosis has taught Micaela a lot. She has learned to listen and accept people as they are. She said, “We all have something that makes us special and I like to hear that about people.” She classifies herself as a “no judge zone” and tries to see the good in everything. She takes nothing for granted, even a meal and feels thankful all the time. Even when she has trouble, she reminds herself that she has a good life.

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In the future, Micaela would like to own her own business. She’s interested in potentially being an English teacher and doing something related to tourism which she has previous experience. She hopes that CF can eventually be prevented before conception. Other countries have much earlier diagnosis of CF and she wants the illness to be better known. In the end, she hopes for a cure.

Instagram: @patriciamicaela

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