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Maureen's Story

Maureen Ferrara's diagnosis with scleroderma has left her changing how she does things in her daily life From getting around to taking care of herself has now become a process. But with a avid spirit and a love of music, Maureen is passionate about being an advocate, and spreading the word about scleroderma

MaureenFerraraCould you give us a little background on your life before and after scleroderma? When were you diagnosed? How has your life changed since then?

 My life after diagnosis in 1999 was still pretty active.   I continued my public school teaching.  Back then I was able to walk on the treadmill and talk on the phone at the same time – no longer possible.  It took about four years from diagnosis until gradually the scleroderma lung progressed and created increased shortness of breath and pulmonary hypertension which forced me onto a medical leave from full-time work in 2004.  It was strange to have the hallways and stairwells in the public school seem to become much longer and more difficult to walk or climb.  I taught classroom music and chorus in the local public school system.  A favorite part of the year were the shows in which I played keyboard in the pit orchestra and had lots of fun working with the students.

 

You're involved in two support groups – as a member in the local scleroderma group and as the leader of the local Pulmonary Hyptertension group. Has being involved with two different diseases helped you understand either one in a new way?

 I’m very grateful the local scleroderma group was formed and is being maintained by Pat and Pete Gerardi.  They do a good job planning with the tri-state foundation for presentation speakers and topics.   Videos of scientific symposiums and medical discussions from the Foundation are extremely informative of the many and varied scleroderma symptoms.  I especially appreciate the collaboration now taken up by the Pulmonary Hypertension Association with the Scleroderma Foundation because secondary pulmonary hypertension is very important to a patient like me as affected as I have been by scleroderma lung.  These are two life-threatening conditions I deal with daily.

 

For you, what's the most difficult thing about living with a chronic illness –  specifically, scleroderma?

 What is most difficult is that the mobility I used to have for traveling is replaced by long-planning and preparation for any travel.  It is more difficult to drop everything and run out to do a simple errand.   Though it’s still possible to travel by car with a portable concentrator, it was easier to plan without the added elements of oxygen and a walker.  I’ve modified how I do things at home but find I need to rest between activities a lot.  I was a patient person to begin with and now, my patience has had to increase.

How does playing music affect your life? Do you worry that one day you might not be able to play?

 Music has been a huge part of my life since I was a youth.  My skills at playing piano support my self-image and happiness and continue to enable me to participate in musical work.  My undergraduate and graduate education are in the performance and teaching areas of music.  I maintain a positive outlook and always have been active in music .  Daily, I celebrate playing and teaching and consider them gifts.  After diagnosis I made a conscious choice that I’d enjoy life and not spend 50% of my days worrying because worry doesn’t accomplish anything.  I’m a glass is “half-full” type person, anyway – even after diagnosis and living my life with a chronic illness.

In addition to your two support groups, you also play piano for a church. And you do all of this despite PAH and scleroderma, which make moving around and breathing difficult. How important to you is community? Does scleroderma make it difficult to participate in the lives of others? Does it make it difficult to invite them into your own life?

I thrive in communities and enjoyed school teaching for that reason.  Attending support group meetings and chatting with people are as much fun as they used to be once I arrive and my breathing relaxes!  PH and scleroderma have made my life a big challenge.  I am challenged socially because when I arrive anywhere, I need to rest for about 2 minutes before I can even speak to anyone because of the way my PH affects me.   I need to be aware of how long I’m staying at any meeting or party because in the back of my mind I’m considering my oxygen supply!  I still have a pretty good social life but miss my best friend and husband who died suddenly in 2000.  I would consider meeting another man to spend my life with but think that venture would be too complicated at this point in my illness.

What motivates you? Do you have any encouraging stories or words of advice you'd like to share with other people who live with scleroderma?

I would encourage people dealing with chronic illness to maintain a schedule as best they can.  Keep communicating with others and be grateful for the positive moments and your abilities as daily gifts.  Friends from your life before diagnosis will probably still be friends and new friends can be made from within the culture of medicine, support groups and hope for cures.  Because of my illness I have been thrust into the medical and hospital cultures like I couldn’t have imagined but I’ve enjoyed interaction with people every minute and have a new appreciation for those who dedicate themselves to caring for others.

Is there anything you think gets overlooked in the conversations surrounding scleroderma? A subject that gets neglected or that people are afraid to talk about?

 Scleroderma is often not talked about because it a rare disorder, encompassing such a wide array of symptoms and is most often not understood well – especially at this time – even by research science and the general medical community.

What's your favorite kind of tea?

My favorite kind of tea is chai.  I love chai lattes, hot and cold!

Do you have any pets? If so, what kinds of animals and what are their names?

I had two cats, Patches and Peepers, lovely animals who died two years ago with 2 weeks of each other.  They were part of my life since 1995 with my husband and stepchildren.  Patches and Peepers were indoor cats and their care was becoming increasingly difficult for me with my conditions.  One cat had to be put down because of disease and the other died from a stroke or loneliness only 12 days later.   Of course I was sad at their loss but grateful I had the chance to get to know the feline species and live with them.

What makes you laugh?

My stepson’s jokes make me laugh!  Absurd humor makes me laugh. I grew up as part of the Saturday Night Live crowd and like most movies including the actors from Second City like Eugene Levy, Martin Short, Andrea Martin, and Catherine O’Hara or an older Saturday Night Live comedian like Steve Martin.  I like newer SNL comedians like Jimmy Fallon and Tina Fey.

 

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