World Fibromyalgia Day 2014 – please like and share this image to raise awareness of fibromyalgia


World Fibromyalgia Day
World Fibromyalgia Day

May 12th is World Fibromyalgia Day. Please like and share this FaceBook cover to help us raise awareness of fibromyalgia across the globe.

For more information please check out this FaceBook page on the subject.


Sjögren’s Syndrome Awareness Month – April is Sjögren’s Syndrome Awareness Month


This month is Sjögren’s Syndrome Awareness Month.

Sjögren’s Syndrome is an autoimmune condition which affects around 1% of the population.  You can find out more about it’s signs and symptoms at our previous post – http://patienttalk.org/tag/symptoms-of-sjogrens-syndrome/.

Indeed many people have only heard of it because Venus Williams suffers from Sjögren’s Syndrome.

To show our support for Sjögren’s Syndrome Awareness Month and to help raise awareness for the month we have produce the picture below.  It would be great if you could like and share it to help us promote Sjögren’s Syndrome Awareness Month.

Sjögren’s Syndrome Awareness Month
Sjögren’s Syndrome Awareness Month


Autoimmune conditions! How many auto-immune conditions have you been diagnosed with?

Autoimmune disease awareness
Autoimmune disease awareness

Having worked in healthcare for nearly ten years (first as a research now as a blogger) I have always been interested in what we can call the diagnostic profile of people with autoimmune conditions.

To get an overall introduction to autoimmune conditions please check out this article – http://patienttalk.org/autoimmunity-what-actually-is-an-autoimmune-medical-condition/.

One of the areas that interested me was that there does seem a strong pattern of people who have one autoimmune condition such as fibromyalgia developing another like lupus or rheumatoid arthritis.

I think it is worth quantifying this further so I am running a short poll to find out how many different autoimmune conditions each of our readers have been diagnosed with.

It would be great if you could use the comments box to share which autoimmune condition these are!  Many thanks in advance.


Behçet’s disease – what are the signs and symptoms of Behçet’s disease? Find out more about this autoimmune condition!

Behçet's disease  and the Silk Road
Behçet’s disease and the Silk Road

Welcome to the latest in our series of informational blog posts looking at some different auto-immune conditions.  For a fuller explanation of what it means to have an auto-immune condition please go to our previous blog on the subject – http://patienttalk.org/?p=939

Behçet’s disease (also called Behçet’s syndrome) is a rare medical condition which leads to inflammation of the blood vessels.  This in turn can cause some of the following symptoms:-

1)   Mouth ulcers.  In fact almost all people with Behçet’s disease will get mouth ulcers.

2)   Genital ulcers.  Again around 85% of people with the syndrome will develop very painful genital ulcers.

3)   Skin lesions such as acne appear in most cases of the condition.  The skin in general can also become more sensitive.

4)   Inflammation of the joints can occur leading to arthritis like symptoms.

5)   Inflammation of the eye.  While only a minority of people with Behçet’s disease develop this symptom it can lead to permanent loss of vision.

6)   Inflammation of the veins and central nervous system.  This is rare however.

Currently the causes of Behçet’s disease are unknown.  However some theories suggest a combination of genetics combined with environmental factors such as infections like Herpes or Hepatitis.

One of the interesting features of the condition is its incidence across the globe.  In the UK for example there are only a few hundred people with the condition. But in Turkey it runs into the tens of thousands.  In fact it is most common in countries which were once part of the Silk Road.  This includes much of the Middle East, Central Asia and China.  Though Japan has high rates as well.  This, of course, does point to a genetic origin.

Because Behçet’s disease is widely considered to be an auto-immune condition typical treatments involve immunosuppressants.

One of the features of these kinds of blogs is that we really like feedback from our readers.  It would be great if people with Behçet’s disease could use the comments box below to tell their stories.  You might like to consider the following questions though any aspect of your story will be of interest to our readers.

a)   What were your original symptoms of Behçet’s disease?  How did the condition develop?

b)  Which healthcare professionals have you seen as part of your diagnosis and treatment?

c)    What treatments for Behçet’s disease have you used and how successful were they?

d)  What do you think the causes of your Behçet’s disease might be?

We look forward to reading your contributions.

 

Many thanks in advance.

Sjogren’s Syndrome – what are the early signs and symptoms of Sjogren’s Syndrome? Share your Sjogren’s Syndrome story!

Sjogren’s Syndrome
Sjogren’s Syndrome
Welcome to the latest in our series of informational blog posts which look at different medical conditions

Today I’d like to focus on a condition called Sjogren’s syndrome.I first came across it a number of years ago when it was widely reported that Venus Williams, the Wimbledon winning tennis player, suffered from the condition.

So what actually is Sjogren’s syndrome?  It is an autoimmune condition whereby the body’s immune system attacks those glands which can produce fluids.  Examples of this include the saliva and tear glands.

It is worth noting that doctors see two types of Sjogren’s syndrome.  Primary Sjogren’s syndrome when it is a “stand alone“ condition.  And secondary Sjogren’s syndrome where it is combined with another autoimmune condition such as Lupus.

The condition is very common – with around 3% of us suffering from Sjogren’s syndrome.  Interestingly 90% of people with Sjogren’s syndrome are women.

The main symptoms of Sjogren’s syndrome are:-

a)      Brain fog – and general cognitive issues.

b)      Sinusitis and nose bleeds.

c)      Dry mouth.

d)     Tooth decay.

e)      Difficulty chewing and swallowing.

f)      Nerve pain especially in the limbs.

g)      Dry eye.  Eye infections are also common.

h)      Vaginal dryness in women.

i)      Gastrointestinal problems.

j)       Bronchitis and pneumonia.

It you are in any way concerned about these symptoms and how they apply to you, it is vital you see your Doctor as soon as possible.

We are also very interested to hear from people who have suffered from Sjogren’s syndrome.  It would be great if you could use the comments box below to share a bit more about your Sjogren’s syndrome journey.  It might be useful for you to consider the following questions-

1)      How long ago were you diagnosed with Sjogren’s syndrome?

2)      What were your original symptoms?

3)      How difficult was it to get a diagnosis of Sjogren’s syndrome? What tests were used?

4)      What treatments have you received for Sjogren’s syndrome?  How effective were these treatments?

5)      What one piece of advice would you give to somebody who has just been diagnosed with Sjogren’s syndrome?

Obviously we are interested in anything you have to say so these questions are really only a guide.  Feel free to add any links you think will be of interest as well.

 

Many thanks in advance.