Community connections are a lifeline when coping with chronic disease
(BPT) – Like many people facing a chronic disease diagnosis, Renee Rodriguez felt utterly alone. After a lifetime of battling illnesses and infections, Rodriguez’s immunologist told her she had Common Variable Immune Deficiency (CVID), a type of Primary Immunodeficiency (PI).[1] Rodriguez had never heard of PI, and she certainly didn’t know anyone who had it. PI is a group of nearly 300 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. [1] [2]
Rodriguez battled these infections her whole life, but she never considered there might be something wrong. As a school teacher, Rodriguez was always around children and simply figured she was more susceptible to germs than others. It wasn’t until Rodriguez began experiencing severe joint pain – often with flare ups leaving her bedridden – that she began seeking answers.
‘When I learned I had PI and may need treatments for the rest of my life, I didn’t know what it meant for my future. I needed answers, and I wanted to talk to somebody who understood what I was going through,’ Rodriguez says.
Rodriguez’s quest for answers quickly led her to MyIgSource, a patient support program from Baxalta. She called the MyIgSource patient support line hoping someone could point her in the right direction.
‘As a newly diagnosed patient, that first phone call was more comforting than I could have ever imagined,’ Rodriguez says. ‘Suddenly, I had access to education and to a group of people who would support my journey and understood what I was going through because they had been there. I knew they were sincere about helping me.’
MyIgSource is a program designed to support patients and caregivers through each step of their journey with PI. A team of Patient and Nurse Advocates* are equipped to address patient needs by providing access to valuable educational tools, clinical support for Baxalta immune globulin (Ig) products, and insurance and financial support. Most importantly, the patient advocates are skilled in building strong one-on-one relationships with patients and caregivers to connect them to their community and provide unbiased emotional support regardless of their treatment, reinforcing that they are not alone.
‘Community connection is critical in coping with chronic disease. MyIgSource was my lifeline during a formative time in my PI journey,’ Rodriguez says.
Because of her experience, Rodriguez was compelled to give back to others who were facing a similar diagnosis. She was thrilled to learn of the opportunity to join the MyIgSource team as a Patient Advocate to tell her story and help inspire others.
‘After facing a scary diagnosis, it was life-changing to know there was somebody on the other line who I could truly depend on and trust. It is incredibly rewarding to get to be that person on the other line now. I’m so proud to be a part of the MyIgSource team. Every day I can give back a little bit of what was given to me, and that’s priceless.’
For more information about PI and MyIgSource, visit www.MyIgSource.com.
*Nurse advocates cannot provide medical advice. For medical questions, please consult your doctor.
[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, AlHerz W, et al. The 2015 IUIS phenotypic classification for primary immunodeficiencies. J Clin Immunol. 2015; 35(8): 727-738.