Scleroderma Interstitial Lung Diseases – What They Are and What’s New

Dr. Dean Schraufnagel, University of Illinois at Chicago, presents a lecture on lung diseases associated with scleroderma.

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Fat Transfer to the Upper and Lower Extremities in Patients with Raynaud Phenomenon

Dr. Zachary, University of Chicago Medical Center, explains a new procedure that takes fat from the abdomen and grafts it into areas on the hands and feet, near the fingers and toes. This fat grafting technique helps to decrease the symptoms and pain associated with Raynaud Phenomenon.

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.

A Message of Hope by Ammie L. Peters

Being diagnosed with a rare blood disorder at the age of 24, I faced more than most will face in an entire lifetime. I stared death in the face multiple times. It seemed every time I went to the doctor another diagnosis would be given. How could this many rare things be falling under an umbrella I was holding? And what does it all mean, could this really be as good as it gets? I was scared but my Heart would not let me give up hope. No matter what the diagnosis or news the doctor shared behind the closed door of that patient room, I held on knowing there was a plan for me. I wasn’t giving up hope, there was a reason I was facing all that I was facing … I had to believe.

I continued to fight through the disease, to keep smiling and have hope in my Heart despite failing every treatment. But there came a time when I hit the breaking point. I didn’t have the energy to fight anymore. I was done. I surrendered with peace in my Heart and had to do one of the hardest things I’ve ever had to do. I had to sit my little boy down and tell him his Mommy was at peace if God came to bring me Home to Heaven. With tears in my eyes and hugging him so tight, I told him not to worry and to know it is okay.

I then had a dream and in the dream an Angel of Healing was sent to me. She had dark hair. She was petite and spoke with a thick accent. When I woke up from my dream, I knew within my Heart I had to hold onto hope. I shared the details of my dream with my father. I knew that I couldn’t give up, there WAS a plan! Approximately a month later, I found myself in the hospital. I had the most excruciating pain in my arms and legs. It felt as if my muscles were being torn right off of my bones. I was surrounded by a team of well respected, experienced specialists but none held the answers to the treatment needed for me. The doctors had not seen the combination of things going on with me. I had failed every treatment and yet again there was nothing more that could be done for me, well according to any medical book.

As I lay in the hospital bed with pain so strong that tears rolled down the sides of my face from the pain, I held onto hope. Although the odds were against me and pulling through looked to be impossible, I knew I could not give up! About that time there was a rustling of papers outside of my hospital room. I looked up to see a petite woman with dark hair walk into my room. She had the presence of an Angel and began to speak in a thick accent. Tears filled my eyes and chills ran through me. She is the Angel from my dream. She introduced herself as Dr. Nadera Sweiss. With tear filled eyes I said “You’re the Angel sent to heal me.” She smiled and hope filled that room with more Light than the brightest sunny day. I asked her where she was from, she replied “Jordan.” She is from the Holy land of all places!

Dr. Sweiss brought treatments to me that no other doctor had brought. The treatments didn’t make sense based on any medical studies but was the perfect combination for me. I was given my life back and being given the opportunity to bring hope to others.

Please know that if you are reading this, there is no coincidence. And no matter what you are facing whether it is a diagnosis of Scleroderma, cancer, lupus or a mix of rare auto-immune conditions that fall under an umbrella not yet given a name … I want you to hold onto hope and know there is a plan for you. You’re still here for a reason. You too have your own story that will impact Hearts around you. You are meant to make a difference in this world so hold onto hope!

With Much Love,

Ammie L. Peters

Ammie L. Peters is a Life Coach, an inspirational author and speaker whose passion is to touch each and every heart with Love, Hope and Inspiration. You can visit her website at http://www.blessings2good.com.

WATCH THE VIDEO:
Ammie was also a speaker at the Scleroderma Foundation, Greater Chicago Chapter’s Patient Education Conference on March 15, 2014. Visit our YouTube channel to view Ammie’s inspirational presentation, “The Impact of Positive Attitude in Dealing with Chronic Disease.”

http://www.youtube.com/watch?v=ICJXm44LWF4

 

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.

Fun Smoothie Recipes

Nutrition is a key component in healthy daily living. For people living with scleroderma it is especially important to include foods containing anti-oxidants and protein. Anti-oxidants have anti-inflammatory and pain reducing properties. Protein is important to build and keep muscle strength. There are many ways to incorporate anti-oxidants and protein into our foods, but smoothies tend to be an easy way to blend it all together. It is an easy food to swallow and to take on the go with you! Smoothies are a refreshing way to start the Summer season. Here are a few delicious recipes to get you started. Enjoy!

Very Berry Blueberry Smoothie

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Photo credit: http://www.allrecipes.com

Ingredients:

1 banana, chopped

1 kiwi, sliced

¾ cup blueberries

1 cup ice cubes

8 ounce container of vanilla yogurt

optional: scoop of protein powder or 1 cup of milk

Directions:

Combine all ingredients in a blender. Blend until smooth.

 

Carrot Apple Ginger Green Smoothie

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Photo credit: http://www.incrediblesmoothies.com

Ingredients:

2 medium sized carrots, chopped

1 medium sized apple, chopped

1 cup baby spinach

1 tablespoon freshly grated ginger root

8-10 ounces water

Directions:

Combine all ingredients in a blender. Blend until creamy and smooth.

 

Chocolate Covered Strawberry Smoothie

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Photo credit: http://www.blissfulbasil.com

Ingredients:

 1 cup strawberries

1 frozen ripe banana

½ cup sweetened vanilla almond milk

2 tablespoons raw cacao

½ teaspoon vanilla extract

Directions:

Combine all ingredients in a blender. Blend 1-2 minutes, or until smooth.

 

For more recipes, go to http://www.allrecipes.com, http://www.incrediblesmoothies.com or http://www.blissfulbasil.com