At this point, you have probably discerned that things look a little bit different at our organization. Formally known as Molly’s Fund, this week we changed our name to Kaleidoscope Fighting Lupus to reflect our growing community of unique individuals living with a very unique illness.
The term “kaleidoscope” was carefully chosen due to its powerful symbolism that reflects both the importance of each individual and the resiliency of our lupus community! We have felt that for the last year, there has been a movement brewing. The strength in our growing community has continued to blow us away, as each person has shared his or her journey with us. People from all over the world have reached out to us and joined our fight against lupus. Our new name reflects this movement.
Our organization has used a symbol of the butterfly from the very beginning. Did you know that a collection of butterflies is referred to as a kaleidoscope? So, as this movement continues and we broaden our mission to the larger community, we want this metaphor to continue to represent us – all of us – a collection of beautiful and unique butterflies – a kaleidoscope.
Additionally, as medical science advances and more discoveries are made, lupus is being broadly recognized as a collection of symptoms and autoimmune manifestations not just a single, distinct disease. In order to describe this change, the medical community is referring to lupus as a “kaleidoscope” autoimmune disease – where causes and symptoms seem to move and change and various overlap conditions are involved.
This blog is going to focus on the medical reason for our name change, and what that means to YOU, as you navigate this illness.
WHY IS LUPUS A KALEIDOSCOPE ILLNESS?
Many individuals with systemic lupus often present with similar features of other autoimmune illnesses. For example, he or she may go to the doctor and be told they have lupus and than be diagnosed later with scleroderma or rheumatoid arthritis.
Why does this happen? Well, some people with lupus can also present with symptoms characteristic of one or more connective tissue diseases. When this occurs, your doctor may use the term “overlap” to describe the illness. Individuals with lupus commonly have a collection of well-recognized overlap diseases. Hence, lupus being referred to as a “kaleidoscope” disorder, one or more connective tissue diseases or a closely related group of disorders that affect the various tissues of the body.
Personally, I am a kaleidoscope. In addition to my SLE diagnosis, I live with rheumatoid arthritis, fibromyalgia and Raynaud’s syndrome. I am sure many (if not all) of you are kaleidoscopes as well.
Here are of some of the most common facets to the “lupus kaleidoscope”
Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” derives from two Greek words: “sclero” meaning hard, and “derma” meaning skin. One of the most visible manifestations of the disease is hardening of the skin.
There are two main types of scleroderma: localized and systemic.
Usually found only in the skin and muscles, rarely elsewhere. This form is usually mild with organs not being affected. Patients with localized scleroderma rarely develop systemic scleroderma.
This type may affect connective tissue in various parts of the body including the skin, esophagus, gastrointestinal tract, lungs, kidneys, heart, and other internal organs. It can also affect the muscles, joints, and blood vessels. The hardening of these organs and tissues can cause them to function less efficiently.
Treatment for scleroderma can include non-steroidal anti-inflammatory drugs and hydroxychloroquine (Plaquenil) typically help both lupus and scleroderma. Methotrexate, azathioprine, prednisone or cyclophosphamide help lupus and overlap syndromes, and perhaps scleroderma lung disease. Scleroderma may modestly benefit from d-penicillamine, relaxin, and minocycline, none of which help lupus.
Rheumatoid arthritis (RA) is a form of inflammatory arthritis and an autoimmune disease. In RA, almost exactly like lupus, for reasons no one fully understands, the immune system – which is designed to protect our health by attacking foreign cells such as viruses and bacteria – instead attacks the body’s own tissues, specifically the synovium, a thin membrane that lines the joints. As a result of the attack, fluid builds up in the joints, causing pain in the joints and inflammation that is systemic, meaning it can occur throughout the body. Also similar to lupus, RA can have
periods of flares and remissions.
Symptoms can be different for each individual and affect different parts of the body. Some common symptoms are:
- Feeling a warm sensation in the joints
- Noticeable inflammation
- Pain or swelling in the affected areas
- Stiffness and/or a decreased range of movement
Rheumatoid arthritis is most often symmetrical, meaning if a joint on one side of the body is affected, the corresponding joint on the other side of the body may also be involved. It usually affects small joints on the hands and feet first, like the knuckle joints on the fingers and base of the big toe. Because the inflammation is systemic, fatigue, anemia, loss of appetite and low-grade fevers are common.
Medications used to treat rheumatoid arthritis are used to:
- a) help relieve symptoms and reduce inflammation (non-steroidal anti-inflammatory drugs and corticosteroids), and
- b) modify the disease or put it in remission (disease-modifying antirheumatic drugs and biologic agents).
Your physician may recommend using two or more together. Some medications affect the immune system or have other side effects, making careful monitoring by your caregiver very important. Along with medications, working closely with your physician to structure a plan for moderate physical activity can alleviate symptoms and improve your general sense of well-being.
MIXED CONNECTIVE TISSUE DISEASE
Characterized by signs and symptoms that are expressed in a variety of disorders, mixed connective tissue disease is a broadly named disease that can include several diseases— primarily of lupus, scleroderma and polymyositis/dermatomyositis. For this reason, mixed connective tissue disease is sometimes referred to as an overlap disease. Mixed connective tissue disease occurs most commonly in young women.
In mixed connective tissue disease, the symptoms of the separate diseases usually don’t appear all at once. Instead, they tend to occur in sequence over a number of years, which can make diagnosis more complicated. Some of the early signs and symptoms often involve the hands: Fingers may swell, and the fingertips may become white or even numb. Later, if the disease progresses, organs such as the lungs, heart and kidneys may also be affected.
Polymyositis is one of the more common connective tissue diseases. It features inflammation of the muscle fibers. Like lupus, the cause of the disease is not known. It begins when white blood cells (the immune cells that cause inflammation) spontaneously invade muscles. The muscles affected are typically those closest to the trunk or torso, resulting in weakness that can be severe. Also similar to lupus, polymyositis is more common in women, often “systemic” (occurring in many areas of the body other than just the skin which is then called “dermatomyositis”) and is considered a chronic illness with periods of increased symptoms (flares or relapses) and periods with minimal or no symptoms (remissions).
Drugs such as prednisone are often used in treatment.
Raynaud’s (ray-NOHZ) disease or Raynaud’s Phenomenon is a problem with blood flow. It is a condition that causes some areas of your body— such as your fingers, toes, and the tip of your nose and ears — to feel numb and cool in response to cold temperatures or stress. In most cases, this inconvenience and discomfort lasts only for a short time, while your body is reacting to the coldness, or stress. In Raynaud’s disease, the smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas. Like many of the diseases listed as “overlap” diseases, women are more likely to have Raynaud’s disease. Treatment of Raynaud’s disease depends on its severity and whether you have any other health conditions. For many sufferers of Raynaud’s, the management of triggers can minimize the attacks. The most common trigger is cold, therefore, keeping the body warm, wearing gloves and avoiding cold temperatures can help. Stress, smoking, caffeine, medications like any cold medicine with pseudoephedrine, as well as beta blockers, can also trigger an attack.
Sjogren’s syndrome is characterized by inflammation of the exocrine glands. Symptoms of sjogren’s may vary depending on the glands involved. The exocrine glands that are usually involved are the parotid glands (minor salivary glands), the lacrimal glands that produce tears, and the pancreatic glands (glands that aid in digestion.) If any or all the glands are affected, the symptoms can include dry mouth, dry eyes and abnormal digestion, which can result in a variety of symptoms including dry eyes and dry mouth and other symptoms depending on which glands are affected.
When sjogren’s syndrome is associated with another disease such as SLE, the treatment includes treatment of the underlying disease such as SLE as well as treatment of sjogren’s syndrome. This usually involves immunosuppressive drugs. Treatment also includes treating the specific symptoms.
- For dry eyes, there are a number of eye drops on the market ranging from simple tear solution to thick methylcellulose solutions that are used during the night to protect eyes while sleeping. Surgically, the tear ducts can be plugged to prevent drainage of any tears that are produced and subsequently keep the eyes lubricated.
- Dry mouth symptoms are treated primarily through frequent sips of water. There is a medication available called “pilocarpine” that stimulates saliva production.
- Sucking on sugarless hard candies promotes saliva production. These patients must keep meticulous care of their teeth, and visit the dentist frequently.
- Digestion difficulties can sometimes be alleviated with the addition of pancreatic enzymes to the diet.
Things to Note with Lupus Overlap Diseases
As mentioned above, when one has lupus in combination with other connective tissue or autoimmune diseases, it is often called an overlap disease. This is one of the main reasons that lupus can be so difficult to diagnose and, all too often, misdiagnosed. It is important to understand because autoimmune disorders share a variety of similar and clinical manifestations. The clustering of coexisting autoimmune diseases or “overlap” diseases in patients with SLE can be called the kaleidoscope of autoimmunity…and can be explained in part by the co-association of genetic and epigenetic variables in each individual.
Be aware of your symptoms that may indicate the development of an overlap disease so that they can be properly managed and treated. The treatments for these syndromes are not always the same as those for lupus; therefore they require separate care and medications.
The term “kaleidoscope” being used to describe lupus may be new to you, but it has been used for years. And we, at Kaleidoscope Fighting Lupus, are thrilled that through our name change, we can bring even more awareness to this concept as we seek to continue to fight for medical advances for each one of our inque members needs and concerns.
Original website verbiage provided by Executive Director, Torey Browne 2018
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