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About the Foundation

May 2015

 

Lisa Hendricks was just seven years old when her parents noticed she was limping and couldn’t lay her hands flat on a table. She hadn’t complained of any pain, or showed any signs that the stiffness in her fingers was slowing her down. In fact, she had just started to play the piano and seemed to love it. Yet her parents knew something was wrong.

Suddenly, Lisa was unable to get up from a sitting position. Her parents rushed her to the doctor, who immediately recognized the symptoms of the linear
and morphea forms of scleroderma. Two months later, specialists at the University of California, San Francisco, confirmed the diagnosis.

And just like that, in the blink of an eye, Lisa had begun her life with scleroderma.

Lisa has recently finished college and is beginning her career as an elementary school teacher. She volunteers for her church, hangs out with friends and family, and still enjoys playing the piano. She just does it all with scleroderma.

Lisa first found the Scleroderma Foundation while she was doing research online about the disease and support groups that provide resources for patients. What she found in her research was life-changing.

“When you talk to other members of a Scleroderma Foundation support group, you know they understand what you are talking about. It’s very comforting,” said Lisa, who belongs to the Foundation’s support group
in Sacramento. “We get together once a month, but really a lot of us are in constant contact. It’s like I finally found where I belong.”

Support is a critical component of the Scleroderma Foundation’s mission, but it isn’t the only aspect that drives the organization. The Foundation educates patients, families, medical professionals and the public through awareness campaigns. The organization also works to raise much-needed funds for research to identify the cause, and ultimately a cure, for the disease. These components make up the Foundation’s three-fold mission of support, education and research.

“When you talk to other members of a Scleroderma Foundation support group, you know they understand what you are talking about. It’s very comforting. We get together once a month, but really a lot of us are in constant contact. It’s like I finally found where I belong.” – Lisa Hendricks

SUPPORT

Because scleroderma is rare (it is estimated that the disease affects about 300,000 people in the U.S., 80 percent of whom are women), people who are newly diagnosed often worry that they are alone with the disease. While health care providers administer medical therapies to aid a patient’s physical wellness, fellow patients play a significant role in the person’s mental and physical health.

It is that reason why the Foundation’s nationwide network of chapters and support groups exist: to make connections with others living with the disease. Here, people can find a safe and welcoming place to share, to learn, to cry, and to laugh.

Coping with Scleroderma

May 2015

 

Any chronic disease is life changing. Symptoms
demand your attention. You have to adjust your schedule to accommodate medications, doctors appointments and treatments of various kinds. You need to arrange for rest and relaxation and do things more slowly than you used to. You need to balance work and rest. You will have to confront changes in your body and the way you see yourself as well as the way others are used to seeing you.

The people around you need to adjust as well. They live with the changes of your disease, too, even though they don’t experience your symptoms.

Perhaps the biggest adjustment is learning to work with and through the changes in order to cope with daily life We hope this pamphlet will help you learn to live well with scleroderma.

Dental Care in Scleroderma

People living with scleroderma face unique challenges while trying to maintain their oral health. They are more likely to be affected by dental conditions such as small mouth, dry mouth, jaw pain, gum disease, and dietary issues. Many people living with scleroderma have hand involvement, making it difficult to brush and floss. Please speak with your dentist about adaptive devices and tools that can help. More frequent check-ups are important for people who have scleroderma.

Digestive System Involvement

September 2014

 

After the skin, the digestive system is the most com- monly affected organ system in people with scleroderma, affect- ing about 75 to 90 percent of all patients (Figure 1). The majority of people with gut involvement experi- ence symptoms that interfere with their day-to-day activities and qual- ity of life.

The function of the gut is to push the food and liquid down from the mouth to the large intestine (or colon), extract and absorb nutrients, and excrete the waste in the form of stool. It does so by well-orchestrated and rhythmic motions of the gut muscles (also known as peristal- sis). The primary events that cause trouble in the scleroderma gut are due to a decrease in the blood sup- ply to the nerves, which are needed to stimulate the bowel. There is also some evidence that nerve damage may occur due to an autoimmune process. With decreased stimula- tion, there is progressive weakening of muscle strength and tone and resultant slowing and dys-coordi- nated motion of the gut. Virtually every gut symptom is the result of weakening of the gut muscle. The weakening starts in the esophagus (food pipe) and stomach, and works its way down to the small and large intestine.

Eating Well With Scleroderma

October 2014

 

The foods we eat affect our health in many ways, for better or for worse. Fruits and vegetables are beneficial foods that provide our bodies with energy and essential nutrients. Processed junk foods, such as cookies, potato chips and sugary sodas, are devoid of nutrients and, in large amounts, potentially harmful to our bodies no matter our age or current health.

Emergency Information Kit

  • What are some challenges that emergency responders may face?

    PROBLEM: The pulse oximeter does not appear to be working correctly.

    WHAT COULD BE HAPPENING?

    No.1: The decrease in blood ow to the ngers of a patient with Raynaud Phenomenon may interfere with the pulse oximeter’s ability to read correctly when applied to the ngers. A special oximeter that is applied to the forehead can be used for an accurate reading if available.

    Further Explanation

    It is estimated that more than 90 percent of scleroderma patients have Raynaud Phenomenon, an exaggerated response to cold or stress. The blood vessels in the ngers and toes constrict, or spasm. This leads to decreased blood ow, causing a change in color to blue or white (cyanosis) to the ngers and toes. When blood vessels become so constricted that blood ow stops for an extended period of time, ulcers may form in the ngers or toes.

    WHAT ELSE COULD BE HAPPENING?

    No. 2: When using supplemental oxygen on a patient with lung scarring (pulmonary brosis) or lung high blood pressure (pulmonary hypertension), you may not see a signi cant rise in the patient’s O2 saturation.

    Further Explanation

    Pulmonary brosis, or pulmonary hypertension, will not allow for proper oxygen transfer from the lungs to the blood. Therefore, a pulse oximetry reading may be affected due to lung involvement.

    PROBLEM: I am unable to get an IV into my scleroderma patient.

    WHAT COULD BE HAPPENING?

    Along with hardening and tightening skin on arms and hands, the vascular system can be affected.
    When trying to place an IV in a scleroderma patient, consider a smaller gauge needle. You can also wrap the site with a warm towel to try and bring the veins closer to the skin surface. Ultrasound guidance can be used to help nd blood vessels if available.

Health Care management Binder

Our Three-Fold Mission of Support, Education, and Research

• Support: To help patients and their families cope with scleroderma through mutual support programs, peer counseling, physician referrals, and educational information.

• Education: To promote public awareness and education through patient and health professional seminars, literature, and publicity campaigns.

• Research: To stimulate and support research to improve treatment and ultimately nd the cause of and cure for scleroderma and related diseases.

While the Foundation allocates an average of $1 million in funds per year for research into the cause and cure of scleroderma, we also consider the other two parts of our mission very important.

Juvenile Scleroderma

April 2014

 

Every parent will experience a moment of panic when told their child has scleroderma. Often they hear little else the doctor has to say. A quick trip to the Internet may reinforce that sense of panic many times over. But there are actually several different diseases that are called “scleroderma” by some doctors. Certain forms of scleroderma are quite serious, but others are much less serious, and all can be treated by knowledgeable physicians.

The first thing a parent must understand is which form of scleroderma their child has. Doctors divide childhood scleroderma into localized and systemic forms, which have very different features. Localized forms of scleroderma are the most common in childhood, and are addressed in this pamphlet. They can be damaging to the skin, muscles, bones, and/or joints, but are unlikely to cause damage to the internal organs. Systemic forms of scleroderma often cause internal organ damage and may be a much greater problem. Many parents are relieved to learn that their child has a localized form of scleroderma, but become concerned that it might turn into systemic. This occurs rarely, if ever. Once your child has been properly evaluated, you should have a definite answer. If you do not know whether your child has a localized or systemic form of scleroderma, please consult your doctor.

Localized Scleroderma

May 2015

 

Localized scleroderma is characterized by inflammation and thickening of the skin from excessive collagen deposition. Collagen is a protein normally present in our skin. It provides structural support. However, when too much collagen is made, the skin becomes stiff and hard.

PPI Use and Complications

September 2014

 

PPIs are commonly used to treat heartburn, ulcers or gastroesophageal reflux disease (GERD).

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A Library of public domino Scleroderma related reports and data

The following documents, reports and posters have been collected and will continue to be collected and updated, looking to provided Scleroderma suffered and others with a single point of reference for as much Scleroderma related documentation as possible.