From the desk of J D Faccinetti – cofounder. We often scan the world for compelling stories that broaden the awareness of pituitary disease and do it well. This one comes from Raquel Ciriza, the president of the Spanish Association of People Affected by Acromegaly (Asociación Española de Afectados por Acromegalia). Raquel is a friend and contributor to PWN and a successful pharmacist. She practices in the beautiful town of Huesca in north-eastern Spain.
A recent article from the Spanish magazine “Vidas Insuperables” – roughly translated “Unsurpassed Lives” – caught our attention. The article traces Raquel’s professional journey as a pharmacist with her family’s pharmacy, and her experiences with acromegaly. This is a loose translation of the original article, which is written in Spanish by Lorena Gonzalez. You can read the original article in Spanish here.
“I was always attracted to dermatology and skincare” – said Raquel in the article – “so when I finished my pharmacy degree, I got a master’s degree specializing in dermatology and skin conditions.” Raquel explains she wanted the store to communicate her interest in skincare, so she designed a store with a very open feel and service-oriented space.
Being a healthcare professional also helped Raquel with her acromegaly diagnosis. In the article from “Vidas Insuperables”she mentions her struggles with health issues, symptoms, and not knowing what was wrong until a doctor, whom she consulted on an unrelated matter, suspected the disease.
Raquel skillfully describes the symptoms and physical characteristics of acromegaly to a general market magazine audience. “A typical symptom is a ring that now doesn’t fit because your fingers are bigger or a shoe that’s too tight,” says Raquel. “And there are also noticeable changes in the nose, forehead, and jaw, which can progressively enlarge.”
“But excess growth hormone can also affect many organs, and bring related cardiovascular problems such as hypertension, diabetes, excessive sweating, headaches, and much more. The symptoms are typically treated by physicians that do not recognize the underlying problems”, she continues.
Spain has a very advanced healthcare system with a broad range of therapies available to successfully treat acromegaly. There are experienced endocrinologists, pituitary surgeons, and wide range of available medications.
Raquel mentions that Pharmacists can play a significant role since, in addition to dispensing medications, they can easily recognize the features and symptoms of the disease. “The people who have acromegaly, the endocrinologist familiar with it, and the people around us, when we know the disease and know the features, can recognize a case very quickly, just by observing it.”, she adds.
As she became more knowledgeable about how to manage her condition, and after meeting many specialists in the field, she realized that many people needed help to deal with the diagnosis and the disease. “We started by creating the Spanish Association of People Affected by Acromegaly,” she says in the article, “when there was not too much information about rare diseases in Spain. Our goal was to give support and information to patients.”
Raquel recalls the first meeting of patients, and the invaluable help she received from the College of Pharmacists of Madrid. “They generously made their facilities available and put everything at our disposal,” she said and added “I will always be grateful for that first meeting which allowed us to keep going. This year we will have our seventh gathering.”
The Association of People Affected by Acromegaly in Spain has many initiatives and a lot of enthusiasm and energy. Raquel and her team have produced some of the best work I’ve seen by patient advocacy groups. But don’t just take my word for it. Here is a link to one of these awareness campaigns published in PWN in November 2018. Read more about the awareness campaigns here. She says it’s worth every single minute you dedicate to it, and we couldn’t agree more. Because of the work and dedication of people like Raquel Ciriza, more people aware of acromegaly, more people are getting treatment for it, and more useful information is available to make their lives easier.
Spanish Association of People Affected by Acromegalia
College of Pharmacists of Madrid
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