Glasgow asks world to ‘Think Again’ about hepatitis – Glasgow takes centre stage in bid to raise awareness of hepatitis via world’s largest tweet wall

World Hepatitis Day 2014 Tweet wall in action

World Hepatitis Day 2014 Tweet wall in action

In recognition of World Hepatitis Day on 28 July 2014, the world’s largest tweet wall was erected in the heart of Glasgow, St Enoch Square, to raise awareness about viral hepatitis and the barriers faced by people living with the disease.

The interactive tweet wall was created to raise awareness amongst the Scottish public and the thousands of people attending the Commonwealth Games. It displayed bricks showing negative aspects of viral hepatitis that people living with the disease face every day. Every tweet and text message sent using the hashtag #thinkhepatitis turned a negative statement into a positive message of support, encouraging people to think again about hepatitis.

“We are very excited to be celebrating World Hepatitis Day at the Commonwealth Games this year,” said Charles Gore, President of the World Hepatitis Alliance. Viral hepatitis rarely gets the visibility it deserves despite killing 1.5 million people every year, the same number as HIV/AIDS.

Presence at such a major international event is therefore crucial to raising awareness on the global stage and challenging preconceptions about viral hepatitis. What’s more, Scotland is one of only a handful of countries worldwide with a comprehensive strategy for tackling all aspects of viral hepatitis. We are proud to be recognising that achievement by celebrating World Hepatitis Day here in Glasgow.”

The event was hosted by the World Hepatitis Alliance, in partnership with the World Health Organisation (WHO), the Scottish Government and local patient groups, in order to raise awareness of hepatitis in Scotland and across the globe to improve prevention, diagnosis and treatment.

World Hepatitis Day is one of only four official disease-specific world health days recognised by WHO.

Speaking about the impact of this year’s World Hepatitis Day campaign, Stefan Wiktor, team lead for WHO Global Hepatitis Programme, who attended the event in Glasgow, commented: “Raising awareness about viral hepatitis is the first step to increasing action against this disease. By spreading its message in countries around the world, the ‘Hepatitis: Think Again” campaign will help to build on the growing momentum to fight this pandemic.”

You can watch the video of the event here and find out more about this innovative use of social media in healthcare!

Staying cool – Improving health – Lowering pain. Sharing tips to keep us cool this summer!

Ice pack.  Make at home a cool off!

Ice pack. Make at home a cool off!

One of the original ideas behind this healthcare blog was to provide and online space where people could share their ideas and experiences. And most importantly their tips.

Last year we ran a poll looking at how temperature impacts upon pain levels. In that case the poll itself looked at the cold but from the comments it became clear that heat was also an issue for pain for many of our readers and commenters.

Indeed one of our most popular posts of last year was the great tip on how to keep cool in the heat. Indeed I was introduced to the idea from a member of the multiple sclerosis community who found it a very effective way of reducing summertime pain.

Similar applies to other conditions such as rheumatoid arthritis and fibromyalgia.

So what is the point of this blog?

Well pretty simple from past research we know that people with conditions such as MS and fibro have loads of great ideas on how to keep cool. The aim of this blog is to ask you to share them in the comments box below.

By the way if you are a commercial vendor we won’t delete you post but we do ask you to be very clear the your offering is part of a business.

Otherwise cheap and effective are the watchwords for the comments on this blog.

Thanks very much in advance!

Viral Hepatitis – Fast Facts at your finger tips

World Hepatitis Day 2014

World Hepatitis Day 2014

As part of our support for World Hepatitis Day 2014 we are delighted to present a brief infographic of the basic facts about viral hepatitis which we think everyone needs to know!

So please feel free to share!

Viral hepatitis fast facts

Viral hepatitis fast facts

Noel in Focus – Surviving and thriving with Muscular Atrophy

Noel Ratapu

Noel Ratapu

Attitudelive have asked us to share some information about one of their latest videos. This time it looks at Noel Ratapu who is a teenager living with Muscular Atrophy who uses photography to express herself and accept life with a disability.

“It’s part of me but I don’t like being known as the girl in the wheelchair… I don’t mind being seen as different from the others – different is unique and if we were all the same that would just be boring.”

Noel Ratapu was born with a condition that means she is gradually losing muscle strength and mobility. By the age of 11 she needed to use a wheelchair… as her body weakened, her anxieties grew. Now 15, Noel has found her voice and identity in the lens of the camera as she accepts life with a disability and documents her journey through photography.

“A lot of my photos have sides of me. If I’m depressed I make it black and white with different lighting and layers in the background. If I’m happy then more colourful and brightness to my face.”

You can see more of Noel’s work here. An online exhibition of her work opens on 15th August 2014. – See the video at at Attitudelives’s website.

Fibromyalgia – Have you suffered from stigma attached to your Fibromyalgia?

Fibromyalgia and stigma

Fibromyalgia and stigma

Over the last few years this blog has look a few times at the kinds of discrimination face by people with various medical condition. Indeed according to our poll run last year over 70% of our readers have faced dicrimination at work because of health problems.

So I was very interested to read an article published earlier this month in Communities Digital News entitled “The fibromyalgia stigma: When law enforcement, not pain management, wins” You can read Paul Mountjoy’s article on their site here.

He argues ” A patient who mentions the “F” word, or fibromyalgia syndrome (FMS), to most primary care physicians, hospital residents, specialists and even pain management clinics, is liable to be labeled as a ‘drug seeker’and not a serious patient.”

Certainly this has been the experience of many patients with fibro, diagnosed or undiagnosed.

But i was wondering to what extent it applies to our readers. It would be great if you could take our poll where we look in more detail at the question of a stigma associated with fibromyalgia.

It would be great if you could use the comments box below to share your story in more detail.

Many thanks in advance.

International Gastroschisis Awareness Day is July 30th.

Gastroschisis  Awareness

Wednesday of this weeks sees the commemoration of International Gastroschisis Awareness Day. According to The Centers for Disease Control and Prevention nearly 1900 babies each year are diagnosed with Gastroschisis each year in America.

Simply put Gastroschisis is a birth defect when the belly ( abdomen) sticks out of the newborn’s stomach. It is treated with surgery and in many cases more than one operation.

For more information on International Gastroschisis Awareness Day please check out the website of Avery’s Angels.

Eid Mubarak to all those celebrating – عيد مبارك – ঈদ মোবারক – عید مُبارک -ഈദ്‌ മുബാറക്‌ – ஈத் முபாரக்

Eid Mubarak

Eid Mubarak

PatientTalk.Org would like to with a great Eid al-Fitr to all those celebrating the end of the Ramadan fast.

عيد مبارك , ঈদ মোবারক , عید مُبارک ,ഈദ്‌ മുബാറക്‌ , ஈத் முபாரக் and Eid Mubarak.

National Cord Blood Awareness Month is July 2014. Would you bank your child’s cord blood?

Stem cell therapy -

Stem cell therapy -

As many readers will know this blogs a great interest in both new ways of treating medical conditions and the new types of medical technology which make these treatments possible.

In particular we have looked at the area of stem cells in particular as a treatment for multiple sclerosis. You can check out our recent blog here.

Interestingly cord blood ( ie from the newly born’s umbilical cord). I would strongly recommend you pop round to the Parent’s Guide to Cord Blood Foundation which gives , for my money, the best overview , of cord blood and cord blood banking. They say “The term “cord blood” is used to describe the blood that remains in the umbilical cord and the placenta after the birth of a baby. Up until recently this blood was discarded as medical waste. Cord blood contains stem cells that may be cryopreserved for later use in medical therapies, such as stem cell transplantation or new emerging therapies.”

The site useful gives a list of cord blood banks not just in America.

Indeed they mention that over 80 different medical conditions could be treated with stem cells from cord blood. These include types of Leukemia , some anemias, Lymphoma, Thrombocytopenia, Bone Marrow Cancers and some solid tumours. That being said it is currently under going clinical trials for such diverse conditions as autism, rheumatoid arthritis, Cerebral Palsy and some types of motor neurone disease.

So it all looks very promising.

As well as raising awareness of Cord Blood Awareness Month we are also interested in your views ion the subject. It would be great if you could share your responses to the following questions using the comment box below:-

a) Have you “banked” your childs cord blood? If so why and how did you go about the process of doing so?
b) Would you consider it in the future.

Any aspect of your cord cell story will be of great interest so feel free to tell us below.

World MS Trend Day 31st July 2014 – get involved in a social media campaign to raise awareness of the need for a cure for Multiple Sclerosis

World MS Trend Day

World MS Trend Day

So what is World MS Trend Day?

Simple the aim is to get the hashtag #curems to trend on Twitter on July 31st 2014.

That is it. You can use social media like Facebook or Twitter to raise awareness of the need for a cure for MS by just using the #curems in all your posts on that day.

You might also wish to post this page to help us with this important campaign.

Thanks very much in advance.

#worldmstrendday #curems

Military Families with a Child with Special Needs Survey: Please take part!

Pennsylvania State University

Pennsylvania State University

We have reposted this on behalf of Jennifer M Davis of Pennsylvania State University. We thought it would be of great interest to the autism community. Davis is currently completing her doctoral research of which this survey is an important part. Please share with anyone who may be inerested.

She writes “We have developed a survey to investigate the experiences and needs of military families with a child with special needs. We hope to use these results to improve therapeutic services for military families and their children. Any military spouse of an active duty service member with a child with special needs 4-21 years of age is able to participate. The survey will take approximately 40 minutes to complete. To complete the survey, click on this link:

We really appreciate your assistance with our research! Please take the survey and share it with others who may be interested.

Thank you for your help and support!”

Please contact Jennifer Davis, Doctoral Candidate at with any questions or concerns.

*This Project has been reviewed and approved by the Institutional Review Board for the Protection of Human Subjects at The Pennsylvania State University.

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