Tag Archives: treatment

VIDEO: Progress in Diagnosis and Management of Scleroderma Lung Disease

 

Watch John Varga, MD speak at the Scleroderma Patient Education Conference on October 10, 2015.

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The video highlights important details about current treatments, the importance of accurate diagnosis and screening, and the future treatments on the horizon. Dr. Varga stresses the importance of integrative care for patients and accurate screening to provide effective treatments for the varying degrees of lung disease. Since 60% of scleroderma patients present with lung complications, it is important to attribute symptoms of lung disease correctly and also not misconstrue those symptoms to another complication involved with scleroderma.

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Spotlight: Britney Helm, Support Group Leader, Milwaukee

Recently we interviewed Britney Helm, one of our new support group leaders! She’s excited to be starting a group in Milwaukee, Wisconsin and invites you to get involved. If you are interested in joining this support group or learning more, contact Britney at brit12@gmail.com.

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

BH: When I was diagnosed with Scleroderma, I researched online and found a lot of information. I had no one to help me deal with the emotional and physical part of the disease.  After being a member of another Scleroderma group, I realized that there is a need in the local area to help one another.

SF: When and where will your group meet?

BH: We meet every 3rd Saturday of the Month from 10am-12pm.
Location:  Froedert Hospital – 8700 W Watertown Plank Rd, Wauwatosa, WI 53226

–Community Conference Room 2 located in the Wisconsin Athletic Club building.  Enter building on the 87th Street side look for Community Conference Room entrance.

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

BH: The most important part of this group to me is to help others.  This disease is scary and is unknown throughout the community. Nothing is better than to have your fellow Scleroderma members coming together supporting each other.

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

BH: I hope to encourage others that this disease can define a part of who you are, but it can’t take your joy.

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

BH:
I love to laugh.

I have hunted alligators in the Panamanian jungle

I love snow, but hate being cold.  I have a lot of gadgets, and a kit that helps keep me warm.

I drive a motorcycle as much as I can, like cars, and getting dirty with tools.

I love to travel.

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

BH:

For patients: Be your own advocate.  Never just take a doctor’s word.  Do your own research and journal your symptoms.

For caregivers: This is tricky because I have seen very supportive people run for the hills.  Caregivers, you will never understand what is going on with Scleroderma patients because the Scleroderma patient doesn’t even know half of the time.  Be patient and understanding.  We are always cold; we are tired but we still want to have fun.  To have fun we have to charge our battery to have a little bit of excitement.  Be patient with us, we are delicate.

 

Britney Helm Group

Britney Helm with her 2015 Germantown, WI  Walk Team

 

Treatment Options for GERD

This week Bethany Doerfler MS, RD, LDN, a clinical research specialist working with Northwestern Memorial Hospital in Chicago, answers one of the many questions that patients prescribed new medications may have. Look for additional posts with commonly asked questions in the future to appear on this blog as well.

 

Q: My GI MD prescribed a proton pump inhibitor. I have read these can contribute to loss of bone density. I already have Osteoporosis should I continue to take this medication?

A:  A combined medical and lifestyle approach is needed to effectively treat GERD. Dietary changes alone cannot entirely prevent stomach contents (food and digestive acids) from washing back up into your esophagus. If untreated with medication, acid exposure can create inflammation and ulceration in your esophagus. Some observational research studies suggested a higher risk of hip fracture in patients who are on long-term acid suppression therapy, spiking concern over bone health. However, recent studies indicate long term PPI use does not increase risk of osteoporosis in the hip or lumbar spine (area studied by a bone density scan) .1 Furthermore, the American College of Gastroenterolgoy suggests that patients with known osteoporosis can remain on PPI therapy.2
If you have osteoporosis or are concerned about developing loss of bone mineral density, it is best to optimize your calcium and vitamin D rather than stopping your PPI therapy. Vitamin D deficiency can be common among patients with Scleroderma. Adult females should aim to consume a mixture of calcium from foods and supplements and achieve a total of approximately 1000 mg calcium daily and 600 IU Vitamin D daily. If you have been diagnosed with a Vitamin D deficiency you may need to take a prescription dose that is higher and is prescribed by your doctor.

Referenced Articles:

  1. Targownik LE, Lix LM, Leung S et al. Proton-pump inhibitor use is not associated with osteoporosis or accelerated bone mineral density loss. Gastroenterology 2010;139:93-101.
  2. Katz, PO, Gerson LB et al. Corrigendum: Guidelines for the Diagnosis and Management of Gastroesophageal Reflux Disease. Am J Gastroenterol 2013;108:308-328.

 

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