Imagine arriving at a clinic for your doctor’s appointment, where spotting a chair to sit is your ultimate goal. You see an empty chair and walk quickly towards it, but wait…it has a reserved sign for a VIP patient. What? How come? VIP? Why?
Or think of a visit to the pediatrician with your child. You are waiting in the exam room and on a hanger behind the door you see a pediatric patient gown with a reservation sign. It’s for Sofía. But why? Does she come often? Is she very sick?
These efforts were executed as marketing guerrillas on the clinical scenery in Puerto Rico to educate patients about Primary Immunodeficiency along with an awareness campaign (insert link to campaign) developed for global biopharmaceutical Baxalta.
Primary Immunodeficiency is the name given to a group of approximately 300 1,2 types of illnesses that are usually hereditary, caused by genetic defects in the immune system. Symptoms can range from mild to severe. People with PI get continuously sick and suffer from recurring infections.
“At the moment there are around 90 patients diagnosed in Puerto Rico and out of these, only 70 are receiving treatment. We also deal with the situation that patients or their caretakers are not aware that there are doctors and specialists who treat PI in our country, and many decide to leave to the United States in search of treatment. This is why, we are working hard with the Puerto Rico Health Department to establish protocols and patient records, along with a network of immunologists around the Island to care for patients with the promptness that Primary Immunodeficiency requires,” explained Dr. Cristina Ramos, an Allergist - Immunologist affiliated to Recinto de Ciencias Médicas and Hospital HIMA-San Pablo in Caguas with private practice in Ashford Medical Center and Ryder Hospital.
The susceptibility to infections is one of the most common symptoms of PI1. While it can be observed in children from a young age, the signs can also present in teenagers and adults. Among the warning signs for children, it should be taken notice if, between the period of a year, a child has four or more new ear infections, two or more serious sinus infections, or two or more pneumonias3. Other signs for children include: taking antibiotics for more than two months with poor results, noticing that a child does not gain weight nor grows normally, and a family history of Primary Immunodeficiency3.
Learn more at www.inmunodeficienciaprimaria.com
1. Blaese RM, Bonilla FA, Stiehm ER, Younger ME, eds. Patient & Family Handbook for Primary Immunodeficiency Diseases. 5th ed. Towson, MD: Immune Deficiency Foundation; 2013.
2. Bousfiha A, Jeddane I, Al-Herz W, et al. The 2015 IUIS phenotypic classification for primary immunodeficiencies. J Clin Immunol. 2015; 35(8): 727-738.
3. "10 Warning Signs of Primary Immunodeficiency." Jeffrey Modell Foundation., 2013. Available at: http://www.info4pi.org.