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 – https://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.

HealClick – find out about this new social media website for patients to discuss healthcare – a guest post by Rachael Korinek


HealClick

HealClick

Welcome to our latest guest post on healthcare and social media

Today Rachael Korinek introduces us to to HealClick and new social media website for patients to discuss healthcare issues.

Korinek shares “HealClick is a brand new and completely free website created for patients and by patients. This unique hybrid of social network and medical forum matches people based on shared details like diagnoses, symptoms, and treatment responses. This makes it much for patients to share and compare treatment experiences. The data that you and other patients provide will be made completely anonymous so it can fuel new research for autoimmune and neuroimmune conditions like Fibromyalgia, Rheumatoid Arthritis, Lupus, Lyme Disease, ME/CFS, and so many others.

Sign up at www.HealClick.com

Help us grow at www.indiegogo.com/projects/revolutionizing-patient-sharing

This project was created by a team of patients in 2013. The co-founders are both chronically ill with multiple neuroimmune and autoimmune conditions. This unique perspective has allowed them to create a site that truly caters to the needs of patients.

Forums are extremely helpful  when researching treatments and for connecting with other patients. But, what about when you can’t find anyone your age?  Or when it seems like no one shares your set of co-conditions and symptoms? What about when you don’t respond normally to standard treatments? Come on over to HealClick.

Our unique matching feature allows you to focus on what’s important; your health. The site factors in your diagnoses, symptoms, treatments tried, and treatment responses and then tells you how similar you are to every other member. No more guessing whether you and another member share medical details in common, just check the match percentage under their profile picture.

Sometimes networking with people with different conditions can be just as beneficial as talking to someone with the same illness. We currently have patients representing over 20 different neuroimmune, autoimmune, and related conditions. Since we have so many conditions represented on our site you can also see how patients with other diagnoses are managing similar symptoms. There are many symptoms like fatigue that are common with multiple conditions and we believe that patients can learn from these other patients even though they might not share a diagnosis.

By combining information from your medical matches and ideas from patients with other conditions we believe that you will be better able to take charge of your health care. Come sign up, make meaningful connections for social support, share your treatment reviews, and compare your results with the results of other patients. Who knows, you might even end up with some new ideas to bring up at your next appointment with your Doctor!

Whenever people share their experiences and network with other patients online they generate huge amounts of data.  Previously, the majority of this valuable health data has gone unused. What if instead, all of this data could be used by medical researchers to help diagnose, treat, or even cure us? That’s HealClick’s goal. But don’t worry, we take pride in protecting patient privacy every step of the way. The data that you share on the site will never be made public and will be completely stripped of all identifiers before being shared with researchers. Check out the link for more information about HIPAA-compliant data security.


We are so excited to share this technology with you. We also want you to know that we pride ourselves on being there for patients.  I don’t have to tell you that having quality social support is important. Chronic illness can be incredibly isolating and hard for other people to relate to or understand. The founders as well as the entire HealClick team all patients. We understand what you’re going through on a personal level and we strive to make HealClick a place where you can find support on bad days and celebration on your good days.

Come join us at www.healclick.com. We can’t wait to meet you!

Still have questions? Check out our blog for answers to 5 frequently asked questions:  http://blog.healclick.com/uncategorized/we-got-answers

October in Lupus Awareness Month – share to raise awareness please

This month is Lupus Awareness Month.

Lupus is part of the family of autoimmune arthritis conditions.  To find out more about autoimmune conditions please check out our previous blog  on the subject https://patienttalk.org/?p=939.

In fact different countries have different awareness days, weeks and months for different conditions. To learn more about Lupus  check out our previous awareness blog here https://patienttalk.org/?p=270

For more information on events for Lupus Awareness Month please have a look at the offical web site http://www.lupusuk.org.uk/latest-news/lupus-awareness-month. There is a lot of useful information on the site.

Finally  please feel free to share  the graphic below which we have produce for Lupus Awareness.

 

Lupus Awareness Month

Lupus Awareness Month


Lupus Awareness Month May 2013 – help us raise awareness of Lupus by sharing on this blog

Not many people realise that around 1 in 185 people suffer from a medical condition called Lupus.  As May is Lupus Awareness Month we thought that it would be useful if we ran a Lupus blog.

The objective of this Lupus blog is twofold.  Firstly to provide some basic information and links to

Lupus Awareness Month

Lupus Awareness Month

resources which provide more information about Lupus.  Secondly it is to give people with Lupus   and caregivers of people with Lupus the opportunity to share their stories.  This sharing can also increase awareness among the wider community as well as providing support to lupus suffers.

So what is Lupus?


Lupus is an umbrella term covering a number of different conditions within the Lupus family.  The condition normally called Lupus is also known as systemic lupus erythematosus or SLE.

It is an autoimmune condition where in effect the body’s immune system attacks the body itself.  With Lupus the immune system is not able to differentiate between healthy tissue and viruses and bacteria.  The immune system attacks on healthy tissue can lead to swelling, pain and leads to tissue damage.

Typical symptoms include:-

1)      Skin rashes

2)      Fatigue (for more information on fighting fatigue please go to https://patienttalk.org/?p=239)

3)      Joint pain

4)      It may also cause flares leading to fevers.

Current thinking is that Lupus will typically have a number of causes rather than just one.  These may be:-

  • Stress
  • Genetics
  • Pregnancy – this is sometimes the trigger
  • The Epstein-Barr virus (EBV) could be linked to child hood Lupus.

Sadly SLE is not at present curable but can be treated by various medications such as steroids and anti-inflammatory drugs.  Avoiding sunlight is also advised.  Many Lupus patients now lead reasonably normal lives compared to 50 years ago when life expectancy after diagnosis was low.

So what about you?

We would love it if people with Lupus, or their caregivers, could tell their Lupus story.  We are interested in everything you have to say but the following questions might be of use.

a)      When were you diagnosed with Lupus and how old were you?

b)      What treatment for Lupus have you used and how successful have these treatments been?

c)       What lifestyle changes have you made because of the Lupus diagnosis?

d)      What do you think caused the Lupus?

e)      What advice would you give to somebody who has just been diagnosed with Lupus?

Please use the comments box below to tell your story.  Feel free to add any links to resources that you think would be of interest to our readers.


Thanks and help us promote Lupus awareness not just this month but every day!