Video: Update on Pulmonary Arterial Hypertension in Scleroderma

Check out Dr. Roberto F. Machado, from University of Illinois at Chicago Medical Center, informative video on pulmonary arterial hypertension. Presented at the Scleroderma Patient Education Conference, March 15th, 2014.

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Spotlight: Pauline Geary, Support Group Leader

In this post, scleroderma support group leader Pauline Geary tells us a little more about herself and the benefits of attending a support group. If you are interested in finding a group meeting in your area click here

What do you love about your support group?

The thing that I love most about the group is watching people support each other.  Sometimes members stay long after the group has adjourned to continue talking and sharing with each other. It’s interesting to see that when participants help each other they help themselves.

How does your support group help and inspire one another?

Sharing their experiences/stories with each other helps to reduce members’ isolation.  They share ways in which they cope with the disease and encourage each other.  The folks in our group are so courageous they inspire me!

How long have you been running the support group in your area?

We started the group in 2005 because we became aware of how isolated scleroderma patients were.

How many people in your area participate in the support group?

The number has varied from one participant to 15 over the years.  Presently there are about 4-7 people who attend regularly. I think that they are provided more opportunity for support at the patient education seminars now and are perhaps not in as much need for the support group.

Where and when does your support group typically meet?

We meet in Oak Park at 10:00 am on the 3rd Saturday of each even numbered month at the West Suburban Hospital in Oak Park. Members are encouraged to attend the Naperville group the 2nd Saturday of each odd numbered month.

What are a few interesting facts about yourself?

I am a Clinical Social Worker by profession.  My co-leader, Natalie, is a teacher by profession. Our style is to facilitate discussion among group participants. Neither of us have scleroderma, but my daughter Monica was diagnosed at the age of 19 back in 1990.  I felt so helpless and hopeless when she was first diagnosed.  The prognosis back then was 8 years post diagnosis and there was little information out there to give us hope.  The Scleroderma Foundation has been very informative to patients.

Do you have any words of advice for scleroderma patients and caregivers?

Knowledge is power!  Become knowledgeable about the disease. Reach out and talk to someone.  When you give to others you also receive.