The following new communities were started in 2018, many of which represent co-conditions that occur with Rare Diseases already supported by Ben’s Friends Patient communities and may be of interest to our existing members:
LivingwithChronicPelvicPain Community – Chronic pelvic pain (CPP) is a disabling disease that causes distress as the quality of life of CPP patients is vastly diminished. In addition, CPP is a public health crisis and is a burden on healthcare expenditure. In the United States, the annual costs for the diagnosis and treatment of CPP are 2.8 billion US . Moreover, to the indirect cost resulting from the absence from work and CPP associated family problems add 550 million US more making the economic burden more than 3.4 billion US $ (Mathias et al., 1996). Yet, the diagnosis of CPP is usually complicated as there are no gold standard guidelines that clearly define this syndrome. Although we have a limited understanding of its etiology, CPP has been found to be correlated with central sensitization, painful bladder syndrome, irritable bowel syndrome, endometriosis and adhesions. As such, in the evaluation of patients, it is imperative to take a comprehensive patient history. Performing physical examinations and ultrasound imaging is of particular value to elucidate the etiology of pain. As CPP patients are at risk for psychological disorders, psychological assessments are critical to diagnose associated psychological disorders and to take these into account in planning a treatment plan for patients. By such evaluation techniques, medical professionals can provide better diagnostic service and patient care to people with CPP.
LivingWithDysautonomia Community – 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. Included conditions are **Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), and Multiple System Atrophy (MSA)*
LivingWithEpidermolysisBullosa Community – Epidermolysis Bullosa (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.*
LivingWithIdiopathicPulmonaryFibrosis Community – 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.
LivingWithNephrotic Syndrome Community – Nephrotic syndrome may occur when the filtering units of the kidney are damaged. This damage allows protein normally kept in the plasma to leak into the urine in large amounts, which reduces the amount of protein in your blood. Since the protein in the blood helps keep fluid in the bloodstream, some of this fluid leaks out of the bloodstream into your tissues, causing swelling, called edema. The swelling may be most noticeable in your legs after you have been standing and around your eyes when you first get up in the morning. Eventually, the swelling in your legs may be there all the time, and it may also occur in other parts of your body. You may notice that your urine foams more than usual because of the amount of protein in it.
LivingWithRaynauds Community – Raynaud’s (ray-NOHZ) disease causes some areas of your body — such as your fingers and toes — to feel numb and cold in response to cold temperatures or stress. In Raynaud’s disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas (vasospasm). Women are more likely than men to have Raynaud’s disease, also known as Raynaud or Raynaud’s phenomenon or syndrome. It appears to be more common in people who live in colder climates. Treatment of Raynaud’s disease depends on its severity and whether you have other health conditions.
LivingWithSarcoidosis Community – Sarcoidosis is the growth of tiny collections of inflammatory cells (granulomas) in different parts of your body — most commonly the lungs, lymph nodes, eyes and skin. Doctors believe sarcoidosis results from the body’s immune system responding to an unknown substance, most likely something inhaled from the air. There is no cure for sarcoidosis, but most people do very well with little or only modest treatment. In half of cases, sarcoidosis goes away on its own. In a few cases, however, sarcoidosis may last for years and may cause organ damage.
LivingwithSleepDisorders Community – 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. Ben’s Friends sponsors a separate community for narcolepsy at LivingWithNarcolepsy.org
One of the new sites we are especially excited about is rebuild of LivingWithRareDisease Community This site now contains links to all our communities as well as an RSS feed of the latest activity in all our community. With the framework of this site, we have housed, a number of instructional videos and slide shows on how to use the Ben’s Friends Communities. These can be accessed from you regular community.
We also have live tech support to help with your computer problems. The support chat is monitored throughout the day by computer geeks who can help with computer issues only. If they are not online, you can leave a message and one of them will get back to you soon.
There are some exciting things happening
now and through out 2019 that will continue to make Ben’s Friends the best
online support resource for Rare Disease. We’ll keep you posted.
Thanks for a great year and Thank you for
your Participation. If you have been away for a while, PLEASE check in and give
us an update. Not a day goes by that one of our current members asks about you.