Category Archives: Support Groups

Spotlight: Aissa Norris, Support Group Leader, Decatur/Springfield

Aissa NorrisRecently we interviewed Aissa Norris, our newest support group leader! She’ll be leading the Central Illinois support group and would love to see you there! If you’re interested in joining this support group or learning more, contact Aissa at 1912barn@gmail.com. More information on the group can be found on the Scleroderma Foundation Greater Chicago Chapter website.

Q: Why did you decide to lead a support group?

A:  I felt that I wanted to become more involved in finding a cure, making people aware of the disease and reaching out to others who are struggling with the challenges that come with this disease. I have had the opportunity to be a leader in other roles and feel that it is important to share my skills and take on this responsibility while I have the ability to do so.

Q:  When and where does your group meet?

A: We meet every other month on Saturday mornings at a Panera in Decatur. We are planning on holding informational meetings each quarter on Saturday mornings so that we are able to include spouses and invite guest speakers as well. We are also having a ‘mini-conference’ on Saturday, June 3, 2017. More information on the group meetings and the mini-conference can be found here.

Q: What do you love most about being involved with this group? 

A: The thing that is of greatest benefit is the friendships that I developed with others who understand chronic illness and how it can impact our lives. We learn from each other and most topics are on the table for discussion. It’s nice to laugh with others, share our concerns and help each other find resources that can be of great benefit as well.

Q: How do you hope to inspire others?

A: I hope that others will see that we can all have an impact which is positive in our lives no matter how ill we are. By sharing our stories and challenges we can each continue on in our lives with hope. I think too that my desire to inspire others comes from the “teacher” in me. I have always been drawn to helping people, specifically children and I hope that by bringing a smile, encouragement and hope to those in our group we each have a brighter day.

Q: Can you share any interesting facts about yourself?  

A: I feel as though I have had such a blessed life.  I have a close family and friends who are supportive. I have had wonderful opportunities to work with special needs students and to care for many children within my home. I have had fun hobbies, from being a hot air balloon pilot to currently running a vintage 103-year-old barn that hosts weddings and special events.

Q: Any words of advice for patients?

A: For those who are faced with challenges with this disease, give yourself permission to go through all the stages of grief related to the change in the life you expected to have, but don’t lose hope of the bright and fulfilling life you still can have. Don’t be afraid to voice your fears or anxiety about this disease. Often, we feel as though we need to be strong for others in our family, but we need to make sure that we are getting the emotional and psychological support for ourselves so that we are able to enjoy the life that has now been dealt to us.

Q: Any words of advice for caregivers?

A: Don’t be afraid to say that you can’t handle this role. Not everyone is meant to be a caregiver and being the individual who helps to find the right caregiver can save your relationship with your spouse, child or relative.  This disease has been dealt to you as well and changed your future too.  Take the steps needed to care for yourself both physically and mentally.  Educate yourself about the disease and don’t be afraid to ask the person with scleroderma how they truly feel, be persistent and listen. They need your love and understanding more than anything else on the good and the bad days.

Q: Why should someone get involved in a support group?

A: Getting involved in a support group whether on line or in person is so important for your mental well-being. Even if you aren’t ready to share yet, take the time to listen to others and giving them encouragement can assist them in healing as well as yourself.  Support groups provide you with the opportunities to grow and learn about the disease and the new treatments that might be headed our way. It can be empowering for yourself or you might even find that you are inspiring to others. Let your story be heard.

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Spotlight: Valarie Hutchison, Support Group Leader, Green Bay/NE Wisconsin

Recently we interviewed Valarie Hutchison, one of our support group leaders! She talks about the benefits of joining a group, advice for patients and finding inspiration. She invites you to get involved if you are in the Green Bay/NE Wisconsin area. If you are interested in joining this support group or learning more, contact Valarie at hutchresource@gmail.com.

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SF: Why did you decide to lead a support group?

VH: The former leader, who was terrific, had some big changes in her life which included a move so it looked like the group would disband.  Even though I had only been diagnosed with scleroderma for about a year, I couldn’t let that happen.  When this disease was first mentioned to me as a possibility, I began to do my own research and I was terrified.  Like a lot of people, I didn’t find knowledgeable doctors locally. I did find this local support group and reluctantly went to my first meeting. I walked in to find two women who educated me, guided me and gave me their opinion that I had scleroderma (which was later confirmed at the Mayo Clinic).  At last, the chaos in my mind was quieted, and I could move forward to get a diagnosis and start treatment.

SF: When and where does your group meet?

VH: Our group meets in a lovely room with a beautiful view at the Bellin Family Health and Wellness Center at 3263 Eaton Rd. in Bellevue WI, 54311.  We meet the second Wednesday of every month from 1:00PM to 3:00PM.

SF: What do you look forward to the most in being involved with this group?

VH: The most gratifying thing for me is the newcomer to the group who is looking for the understanding that only someone who has scleroderma can give. The emphasis of our group is supporting each other and giving each other what we need. It is very free form.

SF: Aside from the support group, what resources would you recommend for patients and caregivers in your area?

VH: I always recommend the Scleroderma Foundation and Inspire.com for the discussion boards.  Both are good resources. If you don’t have your own computer, you can use one at the library, and they have people who can help you navigate the internet if you’re not a tech geek.

SF: How do you find inspiration?

VH: There are days that the fatigue and pain get the best of me.  I have Common Variable Immune Deficiency (CVID), a primary immune deficiency and, for the last two years, Scleroderma. Brought with the scleroderma was the standard Raynaud’s with the deluxe package: autoimmune thyroiditis, Sjogren’s, and, just recently, Addison’s disease.  I’m fortunate because I live alone (with my dog, Stewie) so there is grass to cut and snow to blow and everything that taking care of a home entails.  If I had someone else to do those things for me, I would not be as well as I am. I would certainly not be as mobile because I have tendon friction rubs in most of my joints.  I can be a whiner at times, but since there’s no one here to listen I have to pull up my socks and do what needs to be done.

SF: Can you tell us a few interesting facts about yourself?

VH: I’m a mother. I have two sons that are the reason I’m in Green Bay, WI.  They’re great people- the kind of people I’d want to know even if we weren’t related- and then two grandsons.  I never feel so un-selfconscious as when I’m with those kids.  They cheer me up, make me feel better no matter what.

I worked in the mortgage industry for 20 years before it became so greedy.  I felt good about helping people by putting them in the loan product back then it was quite gratifying and I miss that.

I learned to surf when I was 55 and sailed the Atlantic as first mate on a 43 ft. catamaran when I was 57.

SF: Do you have any words of advice for other patients and caregivers?

VH: Educate yourself first and foremost.  Understand your disease and your test results.  Always, always get copies of test results, radiologist reports and discs of any MRIs or scans and keep them together for the continuation of your care.  Make sure that you understand them. Go to websites like John Hopkins or the Scleroderma Foundation to learn more.  Seek out a support group in your area so that you can talk to people who really understand.  If your doctor isn’t supportive and knowledgeable go to another.

Spotlight: Franny Kaplan, Support Group Leader, Highland Park

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Recently we interviewed Franny Kaplan, our newest support group leader! She’s excited to be starting a group on the North Shore of Chicago, in Highland Park, IL and invites you to get involved. If you are interested in joining this support group or learning more, contact Franny at NSscleroderma@gmail.com. The first meeting will be held Saturday, May 2, 2015.

SF: Why did you decide to start a support group?

FK: There are no support groups serving Northern Cook or Lake County at this time. I know several people who suffer with this disease who have no one to discuss issues with or have the resources to learn about coping alternatives.

SF: When and where will your group meet?

FK: The support group will meet the 1st Saturday of every other month beginning May 2, 2015 at the Chase Bank (lower level) in Highland Park on the corner of Central Avenue and Saint John’s Avenue. Meetings will be from 10am to 12pm.

SF: What are you looking forward to the most in being involved with this group?

FK: I’m looking forward to sharing my experiences by fostering a group who feels comfortable with sharing their fears, feelings and accomplishments in dealing with their illness. Learning from these same individuals to help me deal with my feelings and fears…to help me accomplish more.

SF: How do you intend to help or inspire others?

FK: One day at a time, don’t procrastinate in taking care of yourself, seek solutions, take charge, ask for help and be your own advocate.

SF: Can you tell us a few interesting facts about yourself?

FK: My husband and I love to travel and spend time with our children and grandchildren. I enjoy being with friends, reading, yoga, working out, playing canasta and mahjong. I love to cook and entertain and enjoy giving back to my community. I retired about a year and a half ago working for 30 years in the medical field. Although not clinically trained I have worked in many areas of internal medicine. Prior to that I taught elementary school.

SF: Do you have any words of advice for other patients and caregivers?

FK: I hope the group will help members by being open minded, non-judgmental and positive while listening to them during their difficult times. I hope we can become a community of common interests, not only of a common disease.

Providing Support for Friends and Family with Scleroderma

Friends and family members of those diagnosed with Scleroderma often have many questions about how they can best provide support for their loved ones. This is especially true for those who are unfamiliar with Scleroderma and it’s symptoms, progression, and overall impact. After familiarizing yourself with the disease, there are many simple things that you can do to help provide a support system that your loved one will appreciate.

  • Start by simply asking your loved one what you can do to help. Oftentimes those affected by illness may be apprehensive to ask for help because they don’t want to feel that they are a burden to others.
  • Don’t focus solely on the illness, but rather on your loved one and their physical and mental well-being. Whether they choose to discuss Scleroderma is at their discretion, but it is important to remember not to let this illness define your relationship.
  • Maintain honest, open communication with your loved one. Allowing feelings and frustration to bottle up is never healthy.
  • Some simple ways to help ease daily living activities include things like parking closer when making visits to the store or doctor’s office, as patients can oftentimes experience a great deal of fatigue with Scleroderma.
  • It is important to encourage independence, but offering to take over chores like washing dishes or going to the grocery store can mean a lot to your loved one.
  • Seek out other caregivers. Places to turn for caregiver support can include other family members and friends of the patient (provided that the they have chosen to disclose their illness with others at this time), a therapist or counselor, church or other place of worship, and national caregiver organizations.

Remember that as a friend, family member, or caregiver of someone diagnosed with Scleroderma that you are not alone. There are many great resources available, including support groups located throughout the country. Many of these groups meet in person, and telephone support may be available as well. The Scleroderma Foundation’s website offers a list organized by state that can be used to find a group meeting near you.

Spotlight: Cathy Crego, Support Group Leader

Cathy Crego, left, on an advocacy trip to Washington D.C.
Cathy Crego, left, on an advocacy trip to Washington D.C.

In this post, we highlight Cathy Crego as one of our amazing support group leaders! Read on and learn more about her and her support group. If you aren’t yet a part of a support group, consider joining one in your area!

How long have you been running this group?

I filled in as a leader for about 6 months, but have officially been the leader of this Kankakee group for one year.

 Number of people in your area that participate in your group?

Currently, we have 14 members. Always open to more!

When and where does your group meet? 

We meet from 10am-Noon on the last Saturday of each month at Riverside Medical Center, Conference Room A, in Kankakee, Illinois.

 What do you love about your group?

I don’t know what is NOT to love about this group! They are very supportive of each other and very welcoming to new members.  They truly care about the members of the group- when one person is having a rough time, they are there to pick them up. We have those members that are full of knowledge and always willing to let you know what is going on.  I only wish we met more often!

How does your group help and inspire each other?

Over the past 18 months, our group members have been through a lot.  The biggest thing is that we are compassionate and we listen to each other. No one tries to take over.  When someone is struggling, whether with this awful disease or with something else in their life, we listen to them.  We may not have the answers to solve their problems but each of them knows they can count on one another in times of need. Those that have had the disease longer than others and are more knowledgeable of the disease are willing to share their experience, but are careful not to push and say “this is what you need to do to solve your issues.” This support isn’t necessarily confined to just meetings either- I know some members will call or email to check on each other and/or will contact me to see if I have heard from them.

Tell us an interesting fact(s) about yourself.

Surprisingly, you wouldn’t know it, but I am actually relatively shy. I attended my first meeting by myself and was scared and didn’t know what to expect.  But, here I am- 4 years later and leading the group! I was able to attend Advocacy Day on Capitol Hill when the government shutdown on October 1, 2013.  Even though I am scared to fly, I traveled alone on that trip because the cause was well worth it.

Any words of advice for patients and caregivers?

Patients- don’t be afraid to ask for help! Don’t over do it- there is a tomorrow, but do live for today.  Ask questions of your doctors if you don’t understand or agree. Don’t be afraid to switch doctors if you aren’t comfortable with your doctor. Spread the word about this disease so people can become more educated. Join a support group because they are wonderful.

Caregivers- THANK YOU!! You are greatly appreciated! You are the rock that patients depend on. Know that sometimes we do not tell you everything and it’s not because we don’t want to share with you, but because it’s sometimes hard to not feel like we are being nagging to you. Also- it’s ok not to have answers, but just be an open ear to listen to us.

Spotlight: Edie Northfield, Support Group Leader

Have you thought about joining a support group? Curious about who the leaders are? We sat down with a few of the group leaders and asked them some questions to gain further insight into their group dynamic and some fun facts about themselves! The conversation begins with Edie Northfield in Naperville…..

Edie and her cat Bela
Edie and her cat Bela

How long have you been running the group?

I started the Naperville Group in October 2012 when it became apparent that no one else I knew could understand the changes that had taken place in my body or help me cope with the many aspects of this rare disease.

Number of people in your area that participate in the group?

We’ve had nearly 50 scleroderma patients attend meetings over the last year, some with their family members or friends.  We average 10-12 people per meeting.

When and where does your group meet?

The Naperville group meets from 10am-noon on the second Saturday in January, March, May, July, September, and November.  We meet at Grace United Methodist Church, 300 East Gartner Road in Naperville.

What do you love about your support group?

I love my group because scleroderma patients have a chance to talk to other patients who truly understand their seemingly unique body pains and dysfunctions. We no longer feel alone.

How does your group help and inspire each other?

We offer suggestions for making better food choices, find adaptive exercises, talk about ways to combat medicine side-effects, discuss medical tests, and more.  We encourage each other to keep trying and not give up.  Some of us have even become friends outside of the support group.

Tell us an interesting fact(s) about yourself.

I knit and crochet prayer shawl that my church donates to comfort others in distress.  I also make quilts, love to travel, and I spend as much time as I can with my 7 feral cats.

Any words of advice for other patients and caregivers?

You know your body better than anyone else.  If something doesn’t feel right, keep mentioning it to your doctor, or find another one, until you are satisfied that the proper outcome has been achieved.

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.