Mast Cell Disorder Support Network

Bens Friends 2018 Report


#1

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:

https://www.livingwithchronicpelvicpain.org/ 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.

https://www.livingwithdysautonomia.org/
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)

https://www.livingwithepidermolysisbullosa.org/
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.*

https://www.livingwithidiopathicpulmonaryfibrosis.org/
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.

https://www.livingwithnephroticsyndrome.org/
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.

http://www.livingwithraynaudsdisease.org/
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.

[https://www.livingwithsarcoidosis.org/
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

https://www.livingwithsleepdisorders.org/
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 http://www.livingwithnarcolepsy.org/

One of the new sites we are especially excited about is
rebuild of http://www.livingwithraredisease.org/
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.