Her own support group

[Guest guest]

Her own support group

Tuesday, May 02, 2006

http://www.nj.com/living/ledger/index.ssf?/base/living-0/1146545133102330.xml & co\

ll=1

During her two-year struggle with juvenile rheumatoid arthritis, Rochelle

" Rocky " Lipsky has had to give up her beloved track and volleyball, missed

weeks of high school because of pain and nasty side effects from

medications, and, early on, was filled with anger about developing a serious

chronic disease when she was only 14.

But there was good news to be found as well.

The West Orange teenager learned she could count on a slew of friends who

never gave up on her.

When she was sick at home, they took turns calling or visiting her, bringing

movies and candy.

They jokingly commandeered her pill box, used for storing her meds, and

festooned it with sequins to let her know they weren't put off by her

illness.

They made sure she was kept in the social loop by inviting her to parties

and outings, adjusting their plans to accommodate her if she was feeling

tired or when her condition caused swelling and inflammation in her joints.

" My friends were amazing. I shudder to think how bad this could have been if

I didn't have their support. I would have been miserable, " said Lipsky, now

17 and a senior at the Frisch School in Paramus.

As her condition gradually stabilized with the proper medication and her

health improved, Lipsky began to realize the loving support she enjoyed was

something other teens with chronic conditions knew nothing about.

" That really bothered me. There were kids in my high school who have chronic

diseases, and they're having a tough time, emotionally, academically. " One

of those kids " was out for three weeks and no one called to check on him, "

Lipsky said.

Lipsky went on a mission and created a program called " It's F.A.B. -- For

Teens, About Teens, By Teens. " Next Tuesday at West Orange High School,

she'll host her first community forum, which is open to the public and

designed to foster communication between chronically ill teens and their

healthy peers.

" I want to banish the concept that this is unspoken, that disease is

something you can't talk about, that it's evil and a source of shame, "

Lipsky said. " It's not that at all. "

Funded with a $15,000 grant awarded by the Healthcare Foundation of New

Jersey and administered by the Jewish Family Service of MetroWest, the forum

will include presentations by Lipsky and two other teenagers -- one with

diabetes, the other with sickle cell anemia -- on what it's like to live

with a chronic illness.

Another teenager will talk about living with a sibling with a chronic

condition. Three doctors -- a hematologist (blood specialist), a pediatric

endocrinologist and Lipsky's physician, Sherry -- will provide the

medical perspective on adolescents and chronic diseases. Sherry is a

pediatric rheumatologist and director of clinical rheumatology at the

Children's Hospital of Philadelphia.

A psychologist will be on hand to discuss how teens can relate to and

support peers or family members who are chronically ill.

The forum also will include a question-and-answer session with the audience.

Lipsky hopes that exchange will fuel another crucial component of " It's

F.A.B. " -- dispelling misunderstandings and fears healthy teens may have

about chronic illnesses.

" So many teenagers have unanswered questions about how to deal with the

adolescent chronic illnesses of others -- and they really have no forum for

discussion or education, " she wrote in a letter explaining her desire to set

up the program.

Her doctor agreed, saying that even with access to the Internet, kids

probably wouldn't find information on their own that would be meaningful to

them.

" The problem is finding things at their level, to get to their sorts of

questions, and I think that's probably difficult. A 12-year-old will need to

know different things than an 18-year-old, " Sherry said. " There's a lot of

stuff I've seen out there that isn't as kid friendly. "

While her friends were very supportive of Lipsky, they were also confused

about how to deal with her when she first became ill and through the period

when health care professionals were trying to pin down her diagnosis, said

Lipsky.

" In the beginning, (her friends) knew nothing about the disease and they had

a lot of trouble understanding what that means and how that translated for

me, " said Lipsky, who experienced no symptoms until she woke up one morning

to find her knee had swollen to about five times its normal size. " People

asked me if I was contagious. They asked me if I was dying. It wasn't mean

or malicious, they just didn't know. "

" We were definitely very concerned, " said Ayala Falk, 18, of Riverdale,

N.Y., a close friend and classmate of Lipsky. " She had something so

challenging in her life, and I just didn't know how to deal with it. "

Another friend, Ariel Abrams, 16, of West Orange, and a Frisch sophomore,

said when she heard Lipsky had a form of arthritis, one of her initial

thoughts was, " 'Don't only older people get that?' It was like I couldn't

picture her with a disease older people have. "

Some of her friends were also afraid to broach the subject in the early

stages of her diagnosis, when Lipsky was unsure about what was happening to

her.

" I was angry and upset, and that affected my friends more than anything, "

she said. " Because I was upset, they were upset and confused. It's

definitely not easy being friends with someone who's confused about what's

going on with their body. In the beginning, no one wanted to ask about it.

But it affected their lives, too, when I couldn't go skating or roller

blading. "

Her friends' hesitation and confusion were compounded by Lipsky's own

initial reluctance to discuss her situation. " In the beginning, I was really

sensitive about it because I didn't know what was wrong. "

Her parents, Roz and Marvin Lipsky, decided to let their daughter choose how

public she wanted to be with her health situation. Still, said Roz Lipsky,

she and her husband believed " it might serve her well to share her situation

with others, as it would make her more approachable and more able to cope

with it, and allow others to be more comfortable with her. "

As Lipsky learned more about her disease, she eventually felt more

comfortable about opening up to her peers about it. " When Rocky first got

sick, I knew very little about it, " said Max Tierman, 18, of Woodcliff Lake,

another friend and classmate.

Then, one day, he and Lipsky had a conversation about JRA. " She sat down

with me and discussed it and gave me details of her illness. After that, it

was easy to go over to her and talk about it. Her being open with me helped

me with her. "

A definining moment for Lipsky occurred during the summer before her junior

year, when she participated in a program at Columbia University for high

school students interested in learning about a career in law. None of her

friends were in the program, but she made new friends and, over time, let

them know she had JRA.

" They got to know me, and then they found out I had the disease. I realized

it doesn't define me, " Lipsky said. " I have a chronic illness, but it's not

who I am. "

Lipsky said her disease is under control and she is looking forward to

spending next year studying in Israel, followed by attending the University

of Pennsylvania. " This is a very exciting time.

" Just not worrying about this, " said Lipsky of her JRA, " is very exciting. "