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Scleroderma Awareness Month

  Year-round, researchers are gaining ground in the fight against scleroderma.  Doctors who have studied scleroderma and have extensive experience treating patients, are traveling all over the  world to teach doctors, and medical students.  Patients are gathering in support groups to learn about scleroderma, and share ways they cope.  There is much being done, and […]

Scleroderma: Part of The Adventure

I recently announced my scleroderma may be in remission.  According to Merriam Webster,  remission (is)  a period of time during a serious illness when the patient’s health improves. Remission was my word, not my doctor’s.  I have also heard from other patients who will not use remission as well.  The general consensus is, although the […]

Thank You, Queen Latifah. That Was A Perfect Amount of Scleroderma

When it was announced Queen Latifah would be talking about her mom’s diagnosis about scleroderma on her show, I was skeptical.  First, I’m going to tell you why I liked it, hoping she will read it or someone will tell her about it.   Scleroderma does not only devastate the patient.  I have watched my […]

Harold Ramis Died Today. Here’s Why This Matters To Me.

Early Monday morning, we lost one of the greats.  I grew up in the 80’s.  I spent many days after school and during my summers watching movies by Harold Ramis.  I had a major crush on him and Bill Murray in Stripes.  My dad once told me when he heard I was going in the […]

Back To The Beginning, Again. An update about my exercise activity with scleroderma.

This a follow up to a post I wrote in 2012.  I almost started fixing typos, but realized what it really needed,  was an update.  I have sarcoidosis in addition to scleroderma, but sarcoidosis is contained with medication.  There was a great deal of damage done to my body, including my lungs that are scarred, known as […]

Paraffin and Scleroderma: Comments on an article about scleroderma.

There is an article about a woman with scleroderma in the United Kingdom all over Facebook and too many social networks to list here. I have a few comments to make. Her methods of skin care work for her and kudos to her for having the time and resources to have a full body paraffin bath […]

My Letter to Congress to Urge Funds for Scleroderma Research

This is just one thing I did this morning, which took about 10 minutes. Okay- probably 20, I’m a slow typist. Here was the reply I received in my email. I omitted personal information to post to this blog, like my address, etc… To get started now, click HERE Here is the response I received […]

Bounce to a Cure for Scleroderma

Last year, James Roumeliotis, founder of Bounce to a Cure made it into the Guinness Book Of World Records for The farthest Distance Traveled on a Pogo Stick.  Watch this inspiring video with highlights from James’ Journey through Pogopalooza’s Park at The OC Fair in Costa Mesa. This year, James will attempt to break another […]

Exercise, Scleroderma and Krav Maga

  I made a video last night after Krav Maga Class.  Short story long: I injure myself more doing daily activities, than when I exercise or train with the supervision of a professional.   When my range of motion was lost, I had to relearn simple things like sitting on the floor and getting back […]

Scleroderma Is Not ‘Just A Skin Condition’

  I recently spoke with a customer service representative at the Social Security Office.  She is tasked with asking questions, and making recommendations for the person seeking help.  So, I did a little research. Today, I read an article by Agency for Healthcare Research and Quality.  They presented 5 steps to take after diagnosis.  As […]