medical IDs for scleroderma

Medical IDs for Scleroderma

The confidence to live with scleroderma

Autoimmune diseases can confuse patients and doctors alike, and scleroderma is no exception. This connective tissue disorder is relatively rare, and symptoms can vary from person to person. A common symptom is hardening of the skin.

If you have been diagnosed with scleroderma, you may be encouraged to hear that there are many treatments available that can help with symptoms of this condition. Research is also ongoing to better understand its causes and ways to help manage it.

Medical IDs for scleroderma are one way to ensure medical treatment goes smoothly no matter what the situation is.

How MedicAlert protects those with scleroderma

A scleroderma diagnosis can feel overwhelming, but with help from your medical team and by following instructions for treatment, you can reduce symptoms and complications. Adding a MedicAlert ID and Protection Plan gives you even more peace of mind so that you can live a full and active life.

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Emergency Contact Notification

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Emergency Contact Notification

In an emergency, we connect families so that no one is alone in a crisis.

Pair a medical ID for scleroderma with the protection plan that’s right for you.

What exactly is scleroderma?

The American College of Rheumatology describes scleroderma as an autoimmune disease that primarily involves tightening and thickening of the skin as well as inflammation and scarring in other parts of the body.

Because of damage caused by this inflammation, scleroderma can affect major organs such as the heart, lungs, kidneys, intestinal system, and others. It can range from mild to severe depending on each person. It is rare, and diagnosed in only 75,000-100,000 people in the United States.

What causes scleroderma?

The causes of scleroderma are not fully understood. Researchers have found that a protein that makes up connective tissue in the body, called collagen, builds up as part of this condition.

Some risk factors identified include:

  • Gender– scleroderma is more common in women than in men
  • Genetics– people with specific genes are thought to be more likely to develop scleroderma
  • Environment– certain viruses, medications, or drugs may trigger scleroderma, as well as exposure to harmful chemicals on the job
  • Autoimmune problems– having other autoimmune conditions such as rheumatoid arthritis or Sjogren’s syndrome

Help others help you. Wear a medical alert ID bracelet or necklace engraved with important information for emergency responders and healthcare providers

Centers for Disease Control & Prevention

What are the symptoms and complications of scleroderma?

There are two main categories of scleroderma: localized scleroderma and systemic scleroderma. Depending on which type a person is diagnosed with, symptoms can range in severity. According to MedicAlert partner NORD (National Organization for Rare Diseases), these are common symptoms of scleroderma:

  • Painful joints (arthralgias)
  • Fatigue
  • Weight loss
  • Morning stiffness
  • Raynaud’s phenomenon (loss of blood flow to extremities when cold)
  • Hard, leathery skin

Localized scleroderma is also called “morphea”, and in the early stages, it causes dry patches of yellow or ivory-colored skin. Later in the process, there are hard, oval-shaped areas of skin that are ivory in the center with a purple ring surrounding it. Complications due to the systemic form of scleroderma involve many parts of the body, and can include the following:

  • Swelling of the hands or fingers
  • Inflammatory muscle disease
  • Lung disease
  • Kidney disease (including kidney failure)
  • Heart problems
  • Digestive problems

What to engrave on your MedicAlert ID for scleroderma:

MedicAlert offers free custom engraving on all our scleroderma bracelets and medical ID products. Engravings on medical IDs for chronic scleroderma should include any critical medical information that can protect and save lives in an accident or medical emergency, for example:

  • Medical history, including scleroderma diagnosis
  • Allergies
  • Medications
  • Any other medical information that first responders need to know right away
medical IDs for scleroderma

Sample engraving. Consult our team if you need help engraving your medical ID for scleroderma.

How do you diagnose scleroderma?

Because some symptoms of scleroderma, such as joint pain and fatigue, are common in other autoimmune problems like rheumatoid arthritis, it can be difficult to diagnose correctly. Specialists like rheumatologists and dermatologists can help to pinpoint scleroderma as the cause of these symptoms. To make a diagnosis of scleroderma, there are several things your doctor or specialist will need to consider:

  • Physical exam– looking for symptoms like thickened or discolored skin and swollen fingers, and asking questions about your medical history
  • Blood tests– specific testing that suggests immune system problems can help determine if scleroderma is a possibility; blood testing can also look for kidney problems caused by scleroderma
  • Cardiac testing– tests like an electrocardiogram (ECG) and echocardiogram can look for heart rhythm problems and scarring due to scleroderma
  • Digestive system testing– these tests look for damage to the gastrointestinal (GI) tract including the esophagus
  • Pulmonary function tests (PFTs)- these look for scarring or damage to the lungs due to scleroderma
  • CT scans– these can provide images of damage to major organs such as the lungs and GI tract

How do you treat, manage, and live with scleroderma?

Early treatment of scleroderma is important to help reduce the effects of long-term damage. Your doctor will tailor your treatment to your individual needs based on how scleroderma is affecting you.

For your treatment to be most effective, you’ll need to follow up with your doctor as recommended, and promptly report new problems or medication side effects to your healthcare team. They can help you make adjustments to your treatment so that it is more effective, has less risk of side effects, and results in a better quality of life.

Some of the scleroderma treatments that might be prescribed by your doctor include:

  • Medications– nonsteroidal anti-inflammatories (NSAIDs) and corticosteroids can reduce pain and inflammation; immune-suppressing medication may be used to control autoimmune problems
  • Physical therapy (PT)- combined with exercise, this can help to keep your joints more flexible, even under hardened skin
  • Nutritional support– a dietician can help advise healthy foods, and your medical team can help treat digestive system problems that affect how you absorb food
  • Use of lotions– skin discomfort and itching can be relieved by creams and lotions
  • Managing high blood pressure– stiff blood vessels means treating high blood pressure and other blood flow problems is important
  • Counseling for emotional concerns– stress and worry due to health concerns and the physical changes that scleroderma can cause requires extra support
  • Managing common symptoms– treatment for problems like Reynaud’s, heartburn, and other common problems that can accompany scleroderma can help improve quality of life
  • Surgery– in some cases, surgery may be needed to treat more serious complications, like ulcers on fingertips that won’t heal
  • Dermatologist– There are also several kinds of treatments that can be done with help from a dermatologist to manage skin issues. This includes certain types of light therapy (or phototherapy), laser therapy, and prescription ointments.

Along with these treatments, you can prepare for any medical emergencies with a MedicAlert ID for scleroderma combined with a Protection Plan. Knowing that first responders will understand your scleroderma diagnosis and have access to your medications, allergies, and other medical details can give you greater peace of mind.

MedicAlert Foundation is proud to partner with NORD to provide support, educational resources and tools to help those affected by rare disease live more safely and confidently.

How a  medical ID  for scleroderma combined with MedicAlert  Membership provides peace of mind for those living with scleroderma

For anyone diagnosed with a chronic medical condition like scleroderma, it’s important to plan for any unforeseen medical emergencies that could happen.

Scleroderma can increase your risk of certain complications, and in an emergency, it’s important for first responders to understand your medical history so they can treat you quickly and accurately.

A high-quality MedicAlert ID can ensure that critical details related to your care are relayed to first responders immediately, even if you aren’t able to share those details yourself. Millions of people have trusted MedicAlert to be their voice in an emergency over the past 65 years.

Along with a MedicAlert ID, membership in a Protection Plan adds another layer of support in case of a medical emergency, with benefits such as:

  • A robust digital health profile containing your medical history, medications, allergies, vaccinations, and more
  • A 24/7 Emergency Response Team to relay vital information to first responders
  • Emergency contact notification so your loved ones can be by your side quickly
  • A printable patient profile that you can use for medical appointments
  • Patient instructions that share information important to your care
  • Document storage for medical device info and more
  • Sharing of your advance directives, such as DNR status
DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE. The information in this article is presented for educational purposes only and is not intended as a substitute for professional medical advice, diagnosis and treatment. Always seek the advice of a physician or other qualified healthcare provider for any questions you may have regarding a medical condition or treatment.