The Story of Beatriz and her mother Maria

Beatriz is 46 years old and, according her mother, “she was born without health”. Her mother is her caregiver. She used to take care of her daughter whenever the needed, and she is the pillar of her life. A life marked by pain of someone who was born with a rare disease. A life that was marked by prejudice of people who never saw anyone like Beatriz.

It is difficult to hide the marks of a disease that takes her breath away and makes her tired.

The red colour of the lips and the rosy tone of the face, gives way to the blue cyan that bears resemblance to the sea.

The voice doesn’t keep up with her soul because words – even words – make her tired.

However, Beatriz didn’t always let the signs of her illness intimidate her.  She worked, for many years, in a school. Work kept her alive, and the contact with young people made her forget about the disease. A disease that is taking charge of her body.

Beatriz didn’t do anything to cause the disease, it was not her fault, and she therefore acted as if nothing had happened. She wanted a normal life and tried not to think about the disease.

Her freedom was threatened when the illness forced her to leave what made her feel alive. Her body started to give Beatriz signals that she needed to rest, and she obeyed. She stopped working in order to give her body rest. Then she started to concentrate on the disease that was being previously ignored.

Maria from Portugal has a daughter with PH. Here she talks about the topic "How many times per day do you think of PH?" Please feel free to share the video to create awareness for PH.Beatriz is Maria's daugther. The video of Beatriz was published May 15th. It is touching to see mother and daugther talk about each other and PH. The illness affects the entire family. #TimeMatters #pulmonaryhypertension #ph #phaeurope

Posted by Pulmonary Hypertension Association Europe on Friday, June 23, 2017

At home, it was completely impossible to forget the disease. The reminders came from everywhere: from the recalcitrant voices, the mirrors, or from her mother’s sighs and tears. Her mother was supposed to be her fortress. Family is a fortress, after all. However, Beatriz feels lost inside her fortress. She is obliged to think about the major health threat to her life. She is living as a hostage to her own disease and its rigid rules.

She couldn’t be the old Beatriz anymore, and had to start being a full-time patient. She is living fixed in a reality that was imposed upon her. And, despite how much she insists – and despite her stubbornness – it is impossible for her to not think about the disease.

Beatriz from Portugal has PH. Here she talks about the topic "How many times per day do you think of PH?" Please feel free to share the video to create awareness for PH.Beatriz finds herself thinking about PH quite often. How about you?#TimeMatters #pulmonaryhypertension #ph #phaeurope

Posted by Pulmonary Hypertension Association Europe on Monday, May 15, 2017

Beatriz’ story is like many other stories. Stories imprisoned by the unknown, prejudice and the lack of literacy. In the middle of this storm of misconceptions there are more people like Beatriz.

It is up to us – caregivers, friends and all others – to release them. Even if it is only for a day.

Last updated: July 26, 2017