Vasculitis and Support
When it comes to healing, or getting well after an operation, or treating the symptoms of a chronic illness, there are a dizzying number of opinions offered, and treatments suggested. Your main health care provider will have one set of beliefs. A secondary provider will probably have a different set. Friends and family will “weigh-in”, with suggestions based on what worked with a cousin, co-worker, or acquaintance. Complete strangers will share random, and often disturbingly intimate, details about their own experiences. It can be terribly overwhelming. In addition to the changes in your own body, and in the way people interact with you, due to those changes, there will most certainly be shifts in how you think and feel about yourself.
Very few medical professionals or colleagues will understand these internal changes, and that is where non-medical support becomes vital.
For people with one of the many forms of Vasculitis, there are multiple issues with which to contend, as the disease can affect the body both inside and out. This means that not only do you feel as if you are being attacked from the inside, but the external changes render it almost impossible to keep the presence of the disease to yourself. The first few months, or even years, after being diagnosed can feel like an incredibly lonely time, and that is when it is most important to seek out other members of the community who can give you advice about how to handle the many changes that are required for maintaining a modicum of health and normalcy.
Vasculitis is, at its most basic, a disease that manifests as inflammation, and ultimately the destruction, of blood vessels. It can occur in both veins and arteries, and is related to leukocyte migration. The inflammation causes the walls of the vessels to change, which can result in thickening, thinning, or scarring. If the changes within the blood vessels are severe, blood flow to major organs can be drastically impeded, causing serious damage to the organs, or death. There is little known about what causes Vasculitis. Some cases have been tied to allergic responses to medications or exposure to chemicals. Other forms appear as part of other diseases such as cancer. rheumatoid arthritis, or hepatitis C. The disease is not hereditary, and can be chronic or acute.
There are five major types of Vasculitis, with each type affecting a different part of the body. Cutaneous small vessel Vasculitis affects the skin and kidneys primarily. Wegener's granulomatosis affects the nose, lungs, and kidneys. Churg–Strauss syndrome can affect the lungs, heart, kidneys, and skin. Kawasaki disease can affect the skin, heart, eyes, and mouth. Finally, Buerger's disease can affect the arteries and veins of the legs.
The variety of symptoms and the unclear causes of Vasculitis, often make it difficult to diagnose. Treatment often involves the heavy use of immune suppressant drugs. Unfortunately, while the treatment can reduce or eliminate the symptoms of Vasculitis, it also reduces the ability to fight off other infections or diseases. This means that for many Vasculitis patients, the disease causes feelings of alienation and isolation, and the treatment necessitates a certain level of isolation, as the immune system is rendered unable to defend itself against infections like the common cold. In a body that is already compromised, a cold can become something far more serious. This is where support within the Vasculitis community becomes invaluable.
There are multiple support groups around the world. Many of these groups operate via the internet, which reduces the need to travel, and thereby limits Vasculitis patients’ interaction with germs or bacteria. Many of the groups have a particular focus, and often include a combination of patients, medical staff, and family members. They are excellent forums for information, discussion, and most importantly, the emotional support that is not always available within a Vasculitis patient’s home community.
There are currently 74 organized support groups operating in the United States, Canada, the UK, and Australia. These groups have as many as three hundred members or as few as two or three. There are multiple smaller groups in cities around the world as well, which can be found through local hospitals or hospice organizations. The Vasculitis Foundation, the Vasculitis Clinical Research Consortium, and the Vascular Disease Foundation, all offer links to support groups around the world, as well as providing their own forums for discussion. Living with any illness is incredibly difficult, and Vasculitis has its own special brand of pitfalls.
Finding friendship and support within the community is vital for maintaining a positive attitude. A positive attitude is vital for maintaining your sense of self.
Izzy Woods is a compassionate and health-conscious freelance writer. Her day job involves writing for MSC cruises, but when she isn't doing that she's at the gym or writing for her food blog.