Scleroderma is an autoimmune disorder that more people in Anamosa and elsewhere need to know more about, including health care providers and medical personnel.
The Scleroderma Foundation estimates that about 300,000 Americans have the condition to varying degrees. To some, there are minor symptoms that are irritating at best, but to others, it’s considered life-threatening and may require hospitalization or even discussions about end-of-life care.
Our team at Above and Beyond Home Care and Hospice sometimes work with clients with scleroderma so it’s important that we know all about it to make sure we are providing optimal care and can also answer basic questions for clients and their families.
Of course, we encourage everyone to talk with their doctor or provider regularly since it’s such a unique disease in how and where it affects people. Plus, in some cases, it may advance and progress and even cause death, but in others, it’s simply an inconvenience that people may have to live with for years.
We also keep up to date on current research since, while currently there isn’t a cure for scleroderma, there are different options and therapies that may help treat it and reduce some of the more painful complications.
There are also several varieties, including some that attack the skin and other types that attack internal organs, although it’s easy for people just to refer to them all generally as scleroderma.
Living with it may lead to other medical problems that should be addressed, or at least be aware of, everything from scarring of the lungs and heart to poor circulation in fingertips that can require amputation in severe cases. Medication might be needed, which a home health care employee can check to make sure is taken regularly.
According to the Mayo Clinic, scleroderma is caused by the body producing excess collagen which leads to the hardening and tightening of the skin and connective tissues.
It’s most common between the ages of 30 and 50 but younger children are particularly susceptible.
Depending on the variation, it could affect small areas of the body or larger areas. Localized scleroderma can include just a few spots on the muscles or skin, usually just as waxy patches that can change in size.
Systemic scleroderma can affect organs beyond the skin, including joints, blood vessels, and muscles. The increase in thicker skin or skin that is forced to stretch can cause other problems, everything from ulcers to dental problems. It can also cause organs to work less efficiently especially if they’re becoming malformed due to the condition’s progression.
The digestive system is especially vulnerable since it can affect the esophagus, the stomach, and the intestines. If the system is impacted, it could cause heartburn, digestive problems, and even problems absorbing food.
Scleroderma isn’t considered contagious and not genetic, although there’s no clear clue about how people contract it.
Those with scleroderma will likely be familiar with it, and their providers should be as well. But if they are ever in situations where other health care providers may be involved in their care, it might be up to them or family members to alert them about this condition.
This information can help them receive more optimal care or at least avoid being caused pain by accident or not knowing how to treat this condition.
A 2013 study from England said people with systemic scleroderma are more likely to need emergency services and even emergency surgery for heart or lung problems, staying, on average 5-10 days. But the study said medical staff, including doctors, nurses, and other aides, may not have care plans in place for how to treat these conditions.
Some of the study’s suggestions for improvement included:
- Provide more attention to possible infections, such as changing dressings more often.
- Offer more blankets more often, since people with scleroderma may be more sensitive to cold than standard patients. This can include being aware of drafts from windows or doors.
- Offer more moisturizer since their skin can dry and crack faster, even to the point of being painful.
- Provide assistance with mobility. Advanced scleroderma may have difficulty walking due to muscle or joint hardening. Hospital staff can also consider extra anti-inflammatory medicines, heat treatment, or even massage.
- Be aware of possible digestive or breathing concerns. This can include looking at the menu for possible foods that cause choking if they have a weak esophagus. Their bed should also be elevated as well to optimize breathing. A dietitian also can be consulted.
- Anticipate stress. A patient may already be at a high pain and stress level from dealing with the condition which could be aggravated by a hospital environment. This could lead to higher anxiety and higher blood pressure.
It’s easy to adapt many of these suggestions to the home health care environment, where people dealing with localized or systemic scleroderma may have the same concerns and benefit from the same therapies.
Home health care professionals also should make sure they’re familiar with what that particular client is going through and dealing with so they can provide optimal care.
This month is also a great opportunity to learn more: June is Scleroderma Awareness Month, and there are plenty of resources at the official site.