scleroderma patient assistance

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Where can I get help with scleroderma?

Locate designated scleroderma centers, specialists, clinical trials, studies, and get help navigating the healthcare system. Connect Locally The Foundation can connect you with others living with scleroderma through our nationwide network of chapters, in addition to more than 100 support groups.

Is the information on the Scleroderma registry subject to change?

The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible. The National Scleroderma Foundation is a relentless force in finding a cure and improving the lives of people affected by scleroderma.

Are there any complications and conditions associated with scleroderma?

There are various complications and conditions associated with scleroderma. Patients who are diagnosed with scleroderma are encouraged to receive care at a specialized Treatment Center. Scleroderma Research Foundation collaborates and co-hosts free online webinars providing scleroderma health, wellbeing, and COVID-19 information.

What medications are used to treat systemic scleroderma?

The majority of patients with systemic scleroderma are treated with medication, such as Protonix (pantoprazole), that decreases acid production by the stomach. Some patients are also prescribed medication that increase gastrointestinal motility such as Reglan (metoclopramide) or Motilium (domperidone).

Does scleroderma qualify for disability?

If your scleroderma has begun to affects your organs, you're likely to qualify for disability benefits. Scleroderma is an autoimmune disease that affects the body's connective tissue. Some cases are localized to the skin, causing chronic hardening and tightening.

What is the most serious complication of scleroderma?

In its most serious form (called scleroderma renal crisis), a rapid increase in blood pressure may occur, resulting in kidney failure. Kidney function can be assessed through blood tests.

What helps scleroderma pain?

Treating Scleroderma Getting pain relief through nonsteroidal, anti-inflammatory medications or corticosteroids. Easing skin itchiness with skin lotions and moisturizers. Slowing skin thickening and minimizing damage to the internal organs with medication that suppresses the immune system.

What is the survival rate for scleroderma?

Because the presentation and prognosis of SSc are highly heterogeneous, studies showed a 10-year survival rate between 50 and 84% [4, 18,19,20,21]. Such mortality is still related to SSc in 27 to 72% of cases [3, 6, 8, 16,17,18, 21,22,23,24,25,26,27].

What is End Stage scleroderma?

This type of scleroderma is typically accompanied by shortness of breath, a persistent cough, and the inability to perform routine physical activities. End-stage scleroderma often causes pulmonary fibrosis and/or pulmonary hypertension, both of which can be life-threatening.

Does scleroderma affect the brain?

Conclusion—The neuropathological findings in these two patients suggest that systemic sclerosis may induce primary vascular changes in the brain, of which calcification may be a marker.

Why is scleroderma so painful?

Some people with Scleroderma develop a painful condition called trigeminal neuralgia. This is caused by inflammation of the nerves that provide sensation to the face. The nerve inflammation causes pain. The intensity of pain isn't constant.

Can CBD help with scleroderma?

EHP-101's active ingredient, called VCE-004.8, is a synthetic derivative of CBD, which is extracted from the cannabis plant and works to limit inflammation in scleroderma by activating two protein receptors — peroxisome proliferator-activated receptor gamma (PPARɣ) and cannabinoid receptor type 2 (CB2).

What does scleroderma pain feel like?

Pale fingers that may become numb and tingle when exposed to cold or stress, known as Raynaud's phenomenon. Joint pain. Taut, shiny, darker skin on large areas, which can cause problems with movement. Limited mobility or immobile fingers, wrists or elbows because of the thickening of the skin.

Can scleroderma cause sudden death?

Sudden Cardiac Death. Scleroderma may affect virtually all cardiac structures and is associated with an increased risk of death. Symptoms such as palpitations or syncope are predictive of ECG abnormalities in patients with SSc.

How quickly does scleroderma progress?

If it is acute or rapidly progressing, it may be a life-threatening condition that affects internal organs. The most critical period for rapid progression is usually within the first 2 to 5 years of the start of the disease.

Can you live a full life with scleroderma?

In general, patients with limited scleroderma have a normal life expectancy. Some have problems with their GI tract, especially heartburn; severe Raynaud's and musculoskeletal pain; and a small subset can develop pulmonary hypertension that can be life-threatening.

How quickly does scleroderma progress?

If it is acute or rapidly progressing, it may be a life-threatening condition that affects internal organs. The most critical period for rapid progression is usually within the first 2 to 5 years of the start of the disease.

What does scleroderma do to a person?

Nearly everyone who has scleroderma experiences a hardening and tightening of the skin. The first parts of the body to be affected are usually the fingers, hands, feet and face. In some people, the skin thickening can also involve the forearms, upper arms, chest, abdomen, lower legs and thighs.

What foods should be avoided with scleroderma?

Avoid eating two to three hours before bed- time. Avoid foods that may aggra- vate symptoms such as citrus fruits, tomato products, greasy fried foods, coffee, garlic, onions, peppermint, gas-producing foods (such as raw peppers, beans, broccoli or raw onions), spicy foods, carbonated beverages and alcohol.

What does scleroderma pain feel like?

Pale fingers that may become numb and tingle when exposed to cold or stress, known as Raynaud's phenomenon. Joint pain. Taut, shiny, darker skin on large areas, which can cause problems with movement. Limited mobility or immobile fingers, wrists or elbows because of the thickening of the skin.

How old do you have to be to have scleroderma?

In most cases, people start to develop symptoms between age 30 and 50. Symptoms related to the different organs involved are described below.

What is systemic scleroderma?

Systemic scleroderma is a disease characterized by rapid growth of fibrous (connective) tissue that leads to scarring of skin and internal organs. Approximately one in 10,000 individuals is affected. It is more common in women and most often develops around age 30 to 50. Systemic scleroderma can affect almost any organ in the body, and there is a large variability of symptoms among affected individuals. One of the most common and earliest manifestations of the disease is Raynaud phenomenon, which involves blood vessel spasms (vasospasms) induced by cold temperature or stress. This can lead to temporary finger discoloration, numbness and pain and is also associated with the development of finger ulcers. Of note, Raynaud phenomenon also commonly occurs in healthy individuals. Other manifestations of systemic scleroderma include muscle and joint pain, skin tightening, and dilated blood vessels that can be seen through the skin (telangiectasias). Scarring of internal organs can also lead to gastrointestinal, pulmonary, cardiac, and renal disease. Although systemic scleroderma cannot be cured, many of the symptoms can be treated. A timely diagnosis is important to ensure appropriate management of the disease and associated complications.

What is the most common manifestation of scleroderma?

One of the most common and earliest manifestations of the disease is Raynaud phenomenon, which involves blood vessel spasms (vasospasms) induced by cold temperature or stress.

What are some examples of targeted therapies being investigated?

Example of targeted therapies being investigated include rilonacept and tocilizumab, which respectively target IL-1 and IL-6, two inflammatory mediators thought to be important in systemic scleroderma.

Can scleroderma be cured?

Scarring of internal organs can also lead to gastrointestinal, pulmonary, cardiac, and renal disease. Although systemic scleroderma cannot be cured, many of the symptoms can be treated. A timely diagnosis is important to ensure appropriate management of the disease and associated complications.

Can scleroderma be treated with immunosuppressants?

As systemic scleroderma is an autoimmune disease, medications that suppress the immune system (immunosuppressants) can be used, especially in severe cases with diffuse skin involvement, interstitial lung disease, inflammation of the heart muscle (myocarditis) and severe muscle or joint inflammation.

Can antibodies be detected in scleroderma?

Notably, certain antibodies reacting against components of an individual’s body (autoantibodies) can be identified in systemic scleroderma. Antinuclear antibodies are present in approximately 95% of individuals.

What is the Scleroderma Research Foundation?

The Scleroderma Research Foundation is committed to providing the information the scleroderma community needs. We think the best thing we can do for you is to find a cure. While that may not happen immediately, our research is entirely focused on advancing toward a cure and improving treatments along the way.

What is the cure crew?

The Cure Crew is a grassroots volunteer program with the goal of raising funds and awareness for scleroderma research. You can make a difference to the thousands of people living with scleroderma. Join the Cure Crew.

Is it normal to hear the word "scleroderma"?

Many patients hear the word “scleroderma” for the first time when they are diagnosed. It is normal to have many questions. Whether you have been newly diagnosed or have lived with scleroderma for many years, we hope to help you learn about scleroderma, understand how it is diagnosed, and find ways to treat it.

Can people with scleroderma participate in the study?

People living with scleroderma can participate in this Systemic Sclerosis Research Study by 23andMe. It could change our understanding of this disease and bring us closer to future treatment discoveries.

Why is scleroderma important?

In addition to giving a basic overview of scleroderma, it is designed to help patients get diagnosed as quickly and accurately as possible. It helps you to be better prepared for your doctor visits and also includes information about tests and procedures that are commonly ordered for patients with scleroderma.

What doctor treats scleroderma?

You may wonder about the part of the title of this document: “and Future Patients.” If you are not yet diagnosed with scleroderma, why are you looking for information about this rare disease? The reality is that diagnosing scleroderma, as will be discussed later in this document, can sometimes be very tricky. Most people start their diagnostic journey with a primary care provider (PCP), typically a family medicine or internal medicine doctor, or increasingly these days a primary care nurse practitioner (NP). Many PCPs will see at most one or two patients with scleroderma in their entire career. Ultimately, patients with scleroderma need to be under the care of a rheumatologist – someone who focuses on autoimmune diseases like rheumatoid arthritis, lupus, or scleroderma. But even then, many rheumatologists see very few scleroderma patients, and only a very small number of rheumatologists specialize in this disease, since it is much less common than other autoimmune conditions that they treat.

How many pages are there in Scleroderma FAQ?

Think of the main Scleroderma FAQ as the 50-page User Manual that came with your shiny new 65-inch ultra high definition TV. This Guide is the equivalent of the Getting Started Guide that also came with the TV. While this Guide includes some basic information extracted from the Scleroderma FAQ, it has a very different focus.

What is a PCP in scleroderma?

Most people start their diagnostic journey with a primary care provider (PCP), typically a family medicine or internal medicine doctor, or increasingly these days a primary care nurse practitioner (NP). Many PCPs will see at most one or two patients with scleroderma in their entire career.

Does scleroderma affect everyone?

A Note for Family Members and Friends – Scleroderma affects everyone in a family and a relationship, not just the patient. This section of the Guide can help family members and friends better understand what the scleroderma patient is going through and how they can best be supportive.

Can you get scleroderma without a diagnosis?

So that is one way you might get here even without a scleroderma diagnosis. However, in this modern age it is very common for patients to realize at some point that they have symptoms that are not right and start Googling those for more information, e.g., Raynaud’s, heartburn, puffy fingers, etc.

Who diagnoses scleroderma?

However, most of the time the initial stages of diagnosing scleroderma are usually done by a primary care practitioner (PCP), such as an internist, Family Medicine doctor, ...