Patient Story


as told by caregiver Sharen Long


My name is Sharen and I’m a caregiver of my cousin Janice, whom was diagnosed with PH in July 2004.

In April of 2004 my sisters and a cousin I haven't seen in a few years all gathered for a girls day to pamper ourselves and share a potluck dinner. We ate, we laughed, we caught up on the latest family gossip and just enjoyed each other.

Just before I had decided I'd get ready to go home, I was sitting on the floor with my sister waving bye to others, I saw my cousin’s granddaughter Janice whom I’ve never met before or seen before, only learned she was a granddaughter of my cousin. Janice came in (I'll never forget this) from outside and just walked over to me and kneeled down in front of me and smiled, said hello with this huge grin, placed her hands in mine (It was cold outside that day and her hands were so warm) and asked my name and we got acquainted with the family line...We exchanged phone numbers and I agreed to spend time with Janice to mentor and just have her around to do girly things with.

A week or two later I met for a visit with Janice's grandmother again and that day Janice's mother had left her and her brothers and it was an on going event with family issues through out her life, however this day I decided to take Janice home until school begin again after Easter and it lead to temporary custody.

As Janice began to live with me, I had family members and friends who knew the history of Janice’s aunts and cousins on her father’s side of the family who had some heart problems and thought I shouldn’t get to attached to this child...Hummmmm

During her stay with me I did notice she wanted me to push her in a grocery cart, at the grocer's. She was 11 1/2 yrs old at this time I thought it was just being separated from her mother maybe::: But what girl doesn’t like to shop for clothes or toys??

She would come to me after running or jumping and ask me to look at her chest see how it’s moving, and she become short winded, and I'd ask her to settle down and begin to wonder is the rumor true, is this child ill? Well I had to wait for clearance from the Children and Family Services to get her to a clinic and as we waited I told the Social worker about the rumors and what I saw happening to the child I was assured she would be getting Health Insurance and was asked “WOULD YOU LIKE TO ADOPT OR TAKE LEGAL CUSTODY OF JANICE???"":!!@@. “How about her Health” is all I kept saying. hummmm Maybe a heart murmur, it will be okay...

In June 2004 I finally got Janice to a Pediatrician for a routine check-up and it started that day: right away we were taken to x-ray and when I heard the x-ray reading I knew it was true - she had what all the girls on her father’s side had! At that time I still didn’t know that they died at an early age.

Janice was diagnosed July 2004. For her 12th birthday she got flolan, tracleer, and digitek. We are both thankful for Flolan, tracleer,digitek, and knew this medicine was not around when Janice's Aunt's and Cousins had PH. We are also thankful for the ph community whom I rely on for information to help us cope with PH..

In April 2005 I got FULL-CUSTODY OF Janice because it was the right thing to do...

Its not easy working a fulltime job using flma, for doctors apt's losing a lot in your life raising a child with PH and the Ohio law gives only half social security to a relative and will give a foster parent nearly $1,000.00 a month for a child in Janice's case, Ohio is offering up to $35,000 to kinship caregivers who received custody in July of 2005 I missed it by 3 months.

I was venting a bit but could use some of the money since life insurance is not an option.

Thank You PHA, I guess I needed to do this. Thank You for being here for us......


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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.