Why I Started a Facebook Support Group for Young People With Scleroderma


I was diagnosed with systemic scleroderma at the age of 19 years old. At that time I was a full-time nursing student in college and a dietary supervisor working 60 hours a week at a local nursing facility, and loving every single minute of it.

Being diagnosed with scleroderma changed my whole life in the blink of an eye. All of my plans for the future came crashing down. I felt alone, scared and unsure of what was to come. Being diagnosed with a rare, chronic, terminal disease at such a young age left me with a lot of questions. So I began searching for some sort of support group or site to help me learn more about the disease that was plaguing my life. Looking for help was a major feat in itself. Every site and group I came upon was geared toward elderly, already established patients living with the disease. As a newly diagnosed young woman, I wanted to connect with other individuals within my age group who I could relate to in that aspect.

 

Fast forward about 16 years later. I was on Facebook and I came across the Scleroderma Tri-State Facebook page. They had posted a message asking for comments about their support groups and the likes and dislikes about them. I reached out to Mary Beth (director of patient education and support) with my idea. I wanted to create an online group that was geared towards teens and young adults living with scleroderma. I thought back to when I was a young, newly diagnosed teen and how alone and frustrated I felt that I didn’t have a group of my peers to connect with about this disease. It was important to me to establish a “safe haven,” if you will, for people to come and speak their truth without feeling judged, inferior or out-of-place.

A few months later Scleroderma Super Starz was born. The goal of the group is to provide a safe, judgment-free environment for teens and young adults who are newly diagnosed or have already been living with the disease for some time. I want them to feel like they are a part of something, a family. The Super Starz is there to educate, facilitate and support all members who need help.

At first the group was only going to be for diagnosed patients. But I thought about myself and how supportive my parents and close friends are. I still live at home and my parents are a big part of my daily life and they help me tremendously. I would not be here speaking to all of you today without their love and gentle encouragement. However, they too are living with this disease, just in a different capacity. So I decided to allow the group to include caregivers, spouses and loved ones who, like my parents, want desperately to be there and be a healthy support system.

Scleroderma Super Starz is a Facebook page that has been up since May of this year and I am very proud to say we have 594 members already! We are not only a national group of members from all over the US, but we are also an international group with members from Ireland, Australia, Africa, India, Spain, Brazil, Canada, Egypt and even China! The group is still very new but we are doing very well. I wanted to not only be available for members to have support and connect with others, but I also wanted the group to be an educational tool to help patients understand what they are living with and to help them have a better quality of life and reach their goals and dreams. So I came up with some different ways to teach the members about the disease and help them in their daily lives too.

On Sundays we do something called “Shout Out Sundayz” which is a day for members to post positive stories or phrases about themselves or their loved ones. I try to feature a special story about one of our members each week.

Mondays we do “Medical Mischief Mondayz,” the idea of which was given to me by one of our male members. He wanted to lighten the mood up a little and not always be so serious, so I started to post on Mondays a funny medical cartoon or meme or blooper to give everyone a laugh and lighten up the members’ spirits if they were having a bad day.

Wednesdays we do “Tipz of the Trade,” which I originally started for Scleroderma Awareness Month in June. It was to help the members learn about special gadgets or helpful assisting tools to help them in their daily lives. For example, a gadget to open jars or help you zip your pants or button your shirts. That took off like a firecracker. Every member loved the tips so much I started to do one every Wednesday and “Tipz of the Trade” was born.

Thursdays we do “Healthy Eatz.” This is basically healthy recipes for those members who are having gut issues and need to have healthier diets or just want to live a healthier lifestyle.

Lastly, on Saturdays we do a “Stay Positive Saturday” where I post positive quotes and cute pictures to help members keep a good attitude even when it’s hard to do so. This disease can have so many negative effects on you, mentally and physically, so I think it’s important to stay positive.

The Scleroderma Super Starz is still new and I am learning as I go, but I know we are helping a lot of young teens and adults living with this disease and letting them know they are not alone in this fight. I have always felt like the youth is the future of this disease and so it is extremely important for them to have their voices heard. I like to think I am facilitating that through the Super Starz.

If you would like to join just find us on Facebook, or you can message me directly. Please check us out! I know I say we are a group for teens and young adults, but we do have quite a few members who are “young at heart” or parents of young children who have joined. I am too much of a softy when it comes to people wanting to join that I can’t say no to anyone who wants or needs help, so you will not be turned away because of your age. I’m too nice to do that!

Scleroderma is such a personal disease in that it affects each individual differently and so each person goes through things emotionally, physically and spiritually in different ways. But we still all are living with this unkind chronic illness, and just because scleroderma affects each of our bodies individually doesn’t mean we can’t fight the disease as a unit! Support is not pity and it doesn’t make you “weak.” No one should ever have to fight alone. Let us have your back and fight with you.

We want to hear your story. Become a Mighty contributor here.


Find this story helpful? Share it with someone you care about.


Related to Scleroderma

Scleroderma and Sex: The Issue No One Talks About

Scleroderma killed my sex life. Eventually, my marriage died, too. Today, my life is beautiful nonetheless! Situations like this sometimes happen and still, we hardly ever hear about them. Sex isn’t a taboo subject. At least it shouldn’t be. Yet, even in this day and age, there are often stigmas surrounding discussing our sex lives and any [...]

When I Felt Like My Illness Stole My Identity

Prior to having scleroderma I had a fit body, long hair and a good complexion. I was active and energetic. I ran my own business, worked long hours, and I conquered a 53 mile commute twice a day – in Baltimore and Washington D.C. traffic, in a Jeep Wrangler. I even traveled alone every quarter [...]

How I Cope With Rude Comments About Changes in My Appearance Due to Illness

As a young adult living with a rare chronic illness called scleroderma, I find it to be extremely challenging and at times frustrating even to be around my loved ones. I know that may sound very rude and selfish of me, be that as it may. Having lived with this disease most of my young adult [...]

How Yoga Has Helped Me Manage My Scleroderma

Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before starting new treatment or activity programs. I started yoga back in 2010. I had just been sidelined from work and knew I needed to start focusing on some other things in life. Like [...]