Donor Stories

 Family says, PHA helped us “find our footing”

Srinivasan Family

Looking back, Hari and Subha Srinivasan can remember their son Aditya, experiencing his first symptoms of PH as early as 2002. Simple tasks such as going up steps proved challenging. In 2003, at the age of 4, Aditya fainted as he was playing soccer with his father and his parents took him to see a doctor. After many tests, the Srinivasans were soon referred to a pulmonary specialist and given the diagnosis that would change their lives. Their son had pulmonary hypertension (PH). “Like many other families, we had never heard of PH before,” Subha explains. “It was extremely overwhelming and unnerving to learn about this scary disease. Our doctor gave us lots of information but much of the statistics out there on PH are devastating.”

Aditya’s doctor quickly pointed his family towards the Pulmonary Hypertension Association (PHA) to access more information and gain support from others living with PH. “In the beginning, I found PHA’s extensive website a great source of information,” Hari says. “It really helped us find our footing after Aditya’s diagnosis.”

Now age 12, Aditya is responding well to oral therapies and the Srinivasan family has connected with other parents through PHA’s monthly parent’s telephone support group. “I also hope to find opportunities for Aditya to connect with other pediatric PH patients his age,” Subha says. “Growing up and going through adolescence is already so hard for so many kids adding the challenges that come with a disease like pulmonary hypertension makes it important for these teenagers to find ways to connect.”

Each year Hari and Subha honor the fight of their son with a generous gift to PHA. “We support PHA for three important reasons,” Hari says. “One, PHA has been a great source of information for our family, two, they continue to increase awareness about PH which is so important for a rare disease; and three, PHA is bringing together a community of individuals invested in fighting this disease and hopefully someday finding a cure.”

“There is a long journey ahead for all of us living with PH,” Subha concluded. “But through our involvement with PHA we know that we are not alone in this fight.”


 

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.