Our Patient Support Communities
Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition.
Join one of our safe and supportive patient communities, to connect with someone affected with rare diseases or chronic illnesses.
Addison’s disease also known as primary adrenal insufficiency and hypocortisolism, is a disorder that occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison’s disease, your adrenal glands produce too little cortisol and often insufficient levels of aldosterone as well.
Acute disseminated encephalomyelitis (ADEM) is a neurological condition characterized by a brief but intense attack of inflammation in the brain and spinal cord that damages myelin, the protective covering of nerve fibers. Acute disseminated encephalomyelitis usually occurs following a viral infection but may appear following vaccination, bacterial or parasitic infection, or even appear spontaneously. As it involves autoimmune demyelination, it is similar to multiple sclerosis.
Attention deficit hyperactivity disorder (ADHD) is a problem with inattentiveness, hyperactivity, impulsivity, or executive functioning and organization. Individuals with ADHD may find it much more difficult to focus on a task, particularly an uninteresting one, without being distracted. They may have greater difficulty in controlling what they say or do and may have difficulty sitting still or keeping silent in situations where it is expected. Impulsivity, restlessness, and poor risk assessment may be characteristic. On the other hand, ADHDers are known for creativity, out-of-the-box thinking, and unique problem-solving abilities.
Adrenoleukodystrophy (ALD) is a rare, genetic disorder that leads to brain damage and failure of the adrenal glands. It affects the body’s nervous system, causing the weakening and failure of the nerve impulse; thus leading to disability.
Amyloidosis is a disease that occurs when amyloid proteins build up in your organs. Amyloid is an abnormal protein usually produced by cells in your bone marrow that can be deposited in any tissue or organ. Amyloidosis is rare, and the exact cause is often unknown. Treatments are available to help you manage your amyloidosis symptoms.
Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body.
Ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system. The word “ataxia”, comes from the Greek word, ” a taxis” meaning “without order or incoordination”. The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements.
Atrial septal defect (ASD) is a defect in the septum between the heart’s two upper chambers (atria). The septum is a wall that separates the heart’s left and right sides. Everyone is born with an opening between the upper heart chambers called the foramen ovale. After birth, the opening is no longer needed and usually closes or becomes very small within several weeks or months. Sometimes this opening is larger than normal and doesn’t close after birth. Many babies born with atrial septal defects don’t have signs or symptoms. In adults, signs or symptoms usually begin by age 30, but in some cases signs and symptoms may not occur until decades later.
Brain Aneurysm Support Community is a patient-to-patient support community for families affected by Brain Aneurysm. BAFSupport.org is sponsored by The Brain Aneurysm Foundation, and operated by BensFriends.org and volunteer moderators who have been affected with Brain Aneurysm.
Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). Chiari malformation, is usually present at birth and occurs at the back of the head where the brain and spinal cord connect.
Caregivers Support Community is a welcoming, supportive community intended for family members taking care of family. This community is an Extension of Ben’s friends Rare disease communities and our Face Book Private Group.
Congenital Heart Defects is a group of congenital heart defects including: Atrial Septal Defect, Aortic and Vessel Deffects, Valve defects, Single Ventrical Defects, Tetrology of Fallot, and Transposition of the Great Arteries. This community was originally built to serve ASD patients and was recently expanded to include other congenital defects.
Crohn’s disease is an inflammatory bowel disease (IBD). It causes inflammation of the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea and even malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people. The inflammation caused by Crohn’s disease often spreads deep into the layers of affected bowel tissue. Like ulcerative colitis, another common IBD, Crohn’s disease can be both painful and debilitating, and sometimes may lead to life-threatening complications.
Ulcerative colitis (UC) is a chronic disease of the colon and rectum, together known as the large intestine. When inflammation and ulceration of the large intestine mucosa, or innermost lining, occurs, tiny open sores may form on the surface of the lining. Because inflammation damages the lining of the intestinal wall, it may bring about the onset of a flare, including diarrhea, bloody stool, and abdominal pain or cramping.
Central Pain Syndrome or Complex regional pain syndrome is an uncommon form of chronic pain that usually affects an arm or a leg. Complex regional pain syndrome typically develops after an injury, surgery, stroke or heart attack, but the pain is out of proportion to the severity of the initial injury.
Chronic Pelvic Pain is a community for victims and family effect by Chronic Pelvic Pain Sydrome. While there can be many causes, some of the most common can be Polycystic Ovary, Endometriosis and Interstial Cystitis.
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
Eagle Syndrome is a rare condition where an elongated temporal styloid process (more than 30mm) is in conflict with the adjacent anatomical structures.
Ehlers-Danlos syndromes (EDS) individuals have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.
Epidermolysis Bullosa (EB) (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.
Erythromelalgia (EM) is a rare neurovascular pain disorder that can cause redness and pain in all parts of the body, but most frequently the extremities, such as the hands and feet. It is characterized by intense burning pain, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. The specific underlying cause of EM remains unknown.
Fabry disease is a rare genetic disease a deficiency of the enzyme alpha-galactosidase A (a-Gal A) that causes a buildup of a type of fat called globotriaosylceramide (Gb3, or GL-3) in the body. Fabry disease is classified as a type of lysosomal storage disorder.
Chronic facial pain syndromes effect as much as 1% of the population. Two of the better known conditions are Trigeminal Neuralgia (TN) and Glossopharyngeal Neuralgia (GPN) even though they are among the rarest. Pain specialists have attempted to classify other Facial Pain Syndromes by a number of names including atypical facial pain, Type 2TN, Type 7TN, Atypical Trigeminal Neuralgia (ATN), Trigeminal Neuropathic Pain (TNP) and Atypical Facial Neuralgia (AFP). Recently the term Persistent Idiopathic Facial Pain (PIFP) has been used to describe facial pain that is continuous or lasts most of a day. There simply is no consensus, even among practitioners.
While this site continues to provide Support for TN and GPN, we have come to realize that many other facial pain patients attempt to deal with their disease within the GPN or TN communities. While there is much in common in dealing with the day to day challenges off Chronic facial pain, there is often frustration among the groups when it comes to treatments both drug, surgical and other interventions. For that reason, we have expanded our opportunities for continued peer to peer support to include other Chronic facial pain syndromes. We have chosen to lump them into the Persistent Idiopathic Facial Pain category, while maintaining both the TN and GPN categories.
Fibromyalgia is a rare disorder that may cause widespread pain in the muscles as well as joint stiffness, nerve pain, unrefreshing sleep, and exhaustion. Patients with Fibromyalgia may also present with digestive disorders and balance problems as well as mild cognitive impairment.
Graves’ disease is an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism). Although a number of disorders may result in hyperthyroidism, Graves’ disease is a common cause. Because thyroid hormones affect a number of different body systems, signs and symptoms associated with Graves’ disease can be wide ranging and significantly influence your overall well-being. Although Graves’ disease may affect anyone, it’s more common among women and before the age of 40.
Idiopathic pulmonary fibrosis (IPF) is a type of lung disease that results in scarring (fibrosis) of the lungs for an unknown reason. Over time, the scarring gets worse and it becomes hard to take in a deep breath and the lungs cannot take in enough oxygen. **IPF is a form of interstitial lung disease, primarily involving the interstitium (the tissue and space around the air sacs of the lungs), and not directly affecting the airways or blood vessels. There are many other kinds of interstitial lung disease that can also cause inflammation and/or fibrosis, and these are treated differently. It is important to work with your doctor to determine if you have IPF or another form of interstitial lung disease.
Lupus is a chronic inflammatory disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs. Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.
Lyme disease, or Lyme borreliosis is an infectious disease caused by species of bacteria belonging to the genus Borrelia. Approximately 10% to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months and can be quite debilitating. Although often called “chronic Lyme disease,” this condition is more accurately known as “Post-treatment Lyme Disease Syndrome” (PTLDS).
Systemic mastocytosis (mas-to-sy-TOE-sis) is a disorder caused by a genetic mutation that results in an excessive number of mast cells in your body. Mast cells normally help protect you from disease and aid in wound healing by releasing substances such as histamine and leukotrienes. But if you have systemic mastocytosis, excess mast cells can build up in your skin, around blood vessels, in your respiratory, gastrointestinal and urinary tracts, or in reproductive organs. When triggered, these mast cells release substances that can overwhelm your body and result in symptoms such as facial flushing, itching, a rapid heartbeat, abdominal cramps, lightheadedness or even loss of consciousness. Common triggers include alcohol, temperature changes, spicy foods and certain medications.
Multiple Myeloma is a cancer of the plasma cells which are responsible for producing antibodies. In multiple myeloma, collections of abnormal plasma cells accumulate in the bone marrow, where they interfere with the production of normal blood cells. Most cases of myeloma also feature the production of a paraprotein, an abnormal antibody which can cause kidney problems. Bone lesions and hypercalcemia (high calcium levels) are also often encountered.
Myasthenia gravis is a chronic autoimmune neuromuscular disease that causes weakness in the skeletal muscles, which are responsible for breathing and moving parts of the body, including the arms and legs. The name myasthenia gravis, which is Latin and Greek in origin, means “grave, or serious, muscle weakness.”
Myositis is an inflammation of the muscles, which can be caused by injury, infection, reaction from certain medications, and even exercise. Some forms of Myositis are chronic and idiopathic, meaning the cause is unknown or not well understood. Types of Myositis include dermatomyositis (DM), polymyositis (PM), juvenile myositis (JM), and inclusion-body myositis (IBM).
Narcolepsy is a chronic sleep disorder, or dyssomnia, characterized by excessive sleepiness and sleep attacks at inappropriate times, such as while at work. People with narcolepsy often experience disturbed nocturnal sleep and an abnormal daytime sleep pattern, which often is confused with insomnia. Narcoleptics, when falling asleep, generally experience the REM stage of sleep within 5 minutes; whereas most people do not experience REM sleep until an hour or so later.
Nephrotic Syndrome is a kidney disorder that causes your body to excrete too much protein in your urine. Nephrotic syndrome is usually caused by damage to the clusters of small blood vessels in your kidneys that filter waste and excess water from your blood. Nephrotic syndrome causes swelling (edema), particularly in your feet and ankles, and increases the risk of other health problems.
Oculopharyngeal Muscular Dystrophy (OPMD) is one of several types of muscular dystrophy (MD). MD is a group of genetic, degenerative diseases primarily affecting voluntary muscles. Although named for the muscles first affected, the eyelids (oculo) and throat (pharyngeal), OPMD also can affect facial and limb muscles. OPMD symptoms usually appear during adulthood most, often between 40 and 60 years of age. Although OPMD is a progressive disease, its progression is usually fairly slow. There is no cure for OPMD, but there are a number of therapies, surgeries, and corrective devices such as “crutch eyeglasses” that can help patients cope with this disease. There are also a number of drug therapies on the horizon that may offer relief from some symptoms.
Polyneuropathy is damage or disease affecting peripheral nerves) in roughly the same areas on both sides of the body, featuring weakness, numbness, pins and needles, and burning pain. It usually begins in the hands and feet and may progress to the arms and legs; and sometimes to other parts of the body where it may affect the autonomic nervous system.
It may be acute (appearing suddenly, progressing rapidly and resolving slowly) or chronic (emerging and developing gradually). A number of different disorders may cause polyneuropathy, including Guillian-Barre Syndrome, Chronic Inflammatory Demyelinating Polyneuropathy, and Charcot-Marie-Tooth which are predominantly motor peripheral neuropathies. Although poly-neuropathy is common, it is most often the result of “something else” Guillian-Barre Syndrome, Chronic Inflammatory Demyelinating Polyneuropathy, and Charcot-Marie-Tooth, which are known disease that are either hereditary or autoimmune in nature and are “rare”.
Psoriatic Arthritis (PsA) is a type of inflammatory arthritis which affects people who suffer from the chronic skin condition, psoriasis. Common symptoms of psoriatic arthritis include pain, swelling, or stiffness in one or more joints that are red or warm to touch. Persons with psoriatic arthritis also experience pain in and around the feet and ankles, especially tendonitis in the Achilles tendon or Plantar fascitis in the sole of the foot and in the area of the Sacrum (the lower back, above the tailbone). Changes to the nails, such as pitting or separation from the nail bed occurs.
Primary sclerosing cholangitis (PSC) is a liver disease in which the bile ducts (small tubes through which bile flows from the liver to the gall bladder and intestines) progressively decrease in size due to inflammation and scarring. As a result, bile that is normally carried out of the liver accumulates within the liver, which then damages liver cells. How common is primary sclerosing cholangitis? Although primary sclerosing cholangitis has been considered a rare disease, recent studies suggest that it is more common than originally thought. The disease may occur alone, but frequently exists in association with inflammatory diseases of the colon, such as chronic ulcerative colitis. Primary sclerosing cholangitis affects both sexes, but is more common in men.
Raynaud’s Disease (RD) also called Raynaud’s phenomenon, is a condition of the cardiovascular system in which the blood vessels contract, restricting the flow of blood, usually in the hands, feet or both. Raynaud’s Disease occurs in up to one-third of individuals with lupus.
Sarcoidosis is a multisystem granulomatous disease of unknown etiology. Sarcoidosis coexisting with connective tissue diseases, once considered rare, complicates various such disorders, including rheumatoid arthritis, systemic lupus erythematosus, systemic sclerosis, Sjögren’s syndrome, and the spondyloarthropathies. Symptoms common to sarcoidosis and autoimmune disease include keratoconjunctivitis sicca, weight loss, fever, lymphadenopathy, pulmonary complaints, and cutaneous lesions. Consequently, the diagnosis of sarcoidosis in association with connective tissue disease is often difficult and may require biopsy of the lung, liver, skin, lymph node, muscle, or bone marrow for pathological confirmation.
Sjögren’s Syndrome is an autoimmune disease. Autoimmune diseases feature the abnormal production of extra antibodies in the blood directed against various tissues of the body, which tends to lead to inflammation. The hallmark symptom of Sjögren’s syndrome is generalized dryness, typically xerostomia (dry mouth) and keratoconjunctivitis sicca (dry eyes), known as sicca symptoms. Sjögren’s syndrome may cause skin, nose and vaginal dryness and may affect other organs of the body, including the kidneys, blood vessels, lungs, liver, pancreas, peripheral nervous system or brain.
Sleep disorders number around 88, but most sleep specialists spend much of their time treating the top five: insomnia, sleep apnea, narcolepsy, restless legs syndrome, and periodic limb movements. About one-third of the population has some form of insomnia at any given time, and 10% of that group has chronic insomnia. According to the National Sleep Foundation, a large majority (75%) of Americans say they’ve had at least one symptom of a sleep problem a few nights a week or more within the past year. Bens Friends sponsors a separate community for narcolepsy at LivingwithNarcolepsy.org.
Synovial sarcoma is a rare form of cancer which occurs primarily in the extremities of the arms or legs, often in close proximity to joint capsules and tendon sheaths. As one of the soft tissue sarcomas, it is one of the rarest forms of soft tissue cancer.
Traumatic brain injury (TBI) is a form of acquired brain injury, occurs when a sudden trauma causes damage to the brain. TBI can result when the head suddenly and violently hits an object, or when an object pierces the skull and enters brain tissue.
Von Willebrand’s Disease is a common hereditary coagulation abnormality caused by a qualitative or quantitative deficiency of von Willebrand factor (vWF). Von Willebrand factor (vWF) is a protein that is essential for platelet adhesion.
Warrior Moms Living with Rare Disease is a safe and supportive space where you can share your experiences, seek advice, and access resources to help both you and your child thrive. Connect with other warrior moms who understand the unique challenges of caring for a child with a rare disease.
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