People with Multiple Sclerosis – an invitation to free educational webinar – How to get the most out of your physician or geneticist visits – July 21st, 2015 1PM EST – read our guest post from GeneFo


GeneFo
GeneFo
GeneFo is a new innovative social-medical network that brings together patients affected with genetic-related conditions, caregivers, and healthcare professionals.

GeneFo is its early stages and is seeking members to embrace this technology and help create a great Multiple Sclerosis patient community. Early adopters may find that activity and data are limited at first, but they will have the full attention of genetic in-house counselors and community managers, the opportunity to lead data input, and a voice in shaping the platform with content and features that are important to them!

Multiple Sclerosis Community
Multiple Sclerosis Community

GeneFo was founded by Dr. Yael Wilnai – a Stanford graduate and practicing medical geneticist.
Dr. Wilnai has extensive experience in helping patients navigate the different aspects of their condition. On July 21, 2015, she is kicking off series of free educational webinars to share her knowledge, and will also address the growing interest in genetic research with relation to Multiple Sclerosis. The first webinar will offer tips on how to get the most out of your physician/geneticist visits. The webinar will include a Q&A session and best practices.

https://www.genefo.com/webinar


GeneFo – Three core beliefs:

– Get real-time feedback and information both from top-notch genetic experts and patients/caregivers like you

In medicine, you need to specialize in order to offer the most relevant, reliable and professional input. That is why GeneFo makes sure that in addition to core patient-centered knowledge, they provide medical feedback by top-notch genetic experts with the most up-to-date medical information and resources, all presented in a clear and comprehensive manner.

– Consolidate all aspects of condition management in one place

While the internet is filled with many great resources, they are not usually accessible in one convenient place. Dr.Wilnai witnessed the frustration of patients and caregivers trying to access accumulated medical information from different sources – navigating several different websites were a real pain point. That is why GeneFo is designed to consolidate all aspects of condition management: real-time patient-driven knowledge, expert medical feedback and up-to-date medical content.

– The knowledge shared on GeneFo is used for the common good

Healthcare professionals, looking for opportunities to share their experience and better access to patients, partake in the community in order to advance research for the benefit of patients around the globe.

Don’t Judge by Appearances – like and share this Facebook cover to promote awareness of invisible illness.


Don’t Judge by Appearances - invisible illness facebook cover
Don’t Judge by Appearances

Please feel free to like, share and use the facebook cover we have produced to raise awareness of invisible illness and disabilities entitled Don’t Judge by Appearances.


Finding an expert doctor online. Check out this brilliant idea which could help you find the healthcare advice you need!


Getting a second opinion!
Getting a second opinion!

As pretty much all of my readers know by now I am more than just a bit gung-ho about how the digital revolution has affected the healthcare universe.

For the better in my view . Pretty much without exception.

So I was delighted to receive this update from University Hospitals of Leicester NHS Trust (Leicester’s Hospitals). While the update focused on the achievements of the Leicester Diabetes Centre the website they told me a bout has a whole range of uses for patients and healthcare users pretty much across the globe and for many different medical condition!

The idea is brought to us by a web site called Expertscape.  The data are compiled by Expertscape using a matrix based on nearly 100,000 articles published since 2005.  This helps us find the people who really know their stuff about any medical condition and you can use it to find the healthcare professionals you need to help you.  This might be very important if you need a second opinion?

So who might this work in practice?  Well this is the Leicester Diabetes Centre great example!


Professor Kamlesh Khunti and Professor Melanie Davies have been named in the top 10 diabetes experts globally on a list published at the American Diabetes Association meeting in Boston.

Professor Khunti said: “This was a real surprise to us but we  are absolutely honored to be recognised in this list of some of the top researchers in the world. This is recognition of the work being conducted by our Leicester Diabetes Team from the University of Leicester over the past 15 years.”

Professor Davies said: “This is great news for Leicester and recognises the impact that our research on diabetes is having internationally.”

So what do you think?  Would you use this kind of web site to find a second opinion.

Why not share your thoughts and views in the comments section below!

July is #JuvenileArthritis Awareness Month! Please help us to tweet out awareness!


Juvenile Arthritis Awareness Month
Juvenile Arthritis Awareness Month
As you may know July is Juvenile Arthritis Awareness Month!

Indeed in the USA alone 300,000 children have been diagnosed with arthritis. So we thought it would be a great idea to support the Arthritis Research Foundation’s Twitter awareness campaign.

So how do you do it?

Simple.

Click through the embedded tweet below and the re-tweet it.

Easy. Just two click and you will have made a distance.

Please do join us and show the world how social media is revolutionising healthcare.

Thanks ever so much in advance.


Rose shares her awesome Native American Autism Tattoo – The Puzzles May Not Always Be Perfect But We Some How Put The Pieces Together


Rose's Native American Autism Awareness Tattoo
Rose’s Native American Autism Awareness Tattoo

As you may know over the last few years we have showcased a huge number of autism awareness tattoos and other body art.

A few days ago Rose told us about her autism awareness tattoo with us and very graciously gave us permission to share it with our readers!

Rose told PatientTalk “I’m part native American, raised on a reservation! When I first found out I was pregnant I didn’t tell his dad right away, so when I was walking outside a hummingbird came to me and was flying in front of my face. So I decided to call my fiance and he worked outside construction and he said a hummingbird was in his face to. In our native language the hummingbird means (messengers) & the autism heart symbolizes we are an autism family & we love our children. The Puzzles May Not Always Be Perfect But We Some How Put The Pieces Together💕 ”

Do you have an autism or ASD tattoo you would like to share?  If so why not post a photograph of it in the comments box below.

Thanks in advance and thanks to Rose for sharing her wonderful tattoo!


Over 45s putting health at risk by ignoring heart health


• New research released today sees 70% of people aged 45 and over say they are not worried

Over 45s putting health at risk by ignoring heart health
Over 45s putting health at risk by ignoring heart health
about their heart health, despite the fact that over 2.3 million people are thought to be living with some form of coronary heart disease in the UK
• Almost half did not know heart disease is the biggest health-related cause of death in the UK, despite the fact that 152,436 people die of the disease every year, an average of 417 people per day
• Around one in seven in that age group admit they have never done anything to try and actively improve their heart health – however, if the two main causes of heart disease are unhealthy blood and high cholesterol a simple lifestyle change can make a big difference to help prevent such diseases and strokes occurring.

Millions of people aged 45 and over could be seriously jeopardising their health because of a lack of concern over the state of their hearts. That’s the warning coming today, after new research shows that 70% of people aged 45 – the age group most at risk – and over are not concerned about their heart health at all.


Whilst an estimated 2.3 million people in the UK are living with a condition of coronary heart disease, the research shows that the majority of the population do not regard it as being a life threatening concern. Even the over 45’s, those at the greatest risk from heart problems, are only slightly more concerned than those under 45, with only 27% in that age group, worried!

Furthermore, around one in seven 45 and overs don’t do anything to actively improve their heart health – only slightly less than 26% under 45s who admitted the same.

Across all age groups, over half (51%) were not aware that heart disease is the biggest health-related cause of death in the UK.

152,436 people have died in the UK over the last year from heart disease, an average of 417 people per day. If this rate continues over the next 20 years over 3 million people will be at risk.

The survey also questioned people as to what lifestyle changes they have made to help improve their heart health.

Less than half of all British adults say they exercise more, 39% have cut down on their intake of saturated fats, and 37% have cut down on their salt intake.

The study also showed a lack of awareness around what can lead to a heart attack, with almost a third not realising that blood clots can be a contributor.

Oxcraft’s Quiet Books – a guest post from Euying Chong on how quiet books could help people with autism and related conditions.


Hello! My name is Euying Chong and I currently live in the Netherlands with my

Quiet Books from Oxcraft
Quiet Books from Oxcraft

husband and two beautiful toddlers. I am a resident artist at Oxcraft Shop, where I hand make quiet books, embroidered children’s wall poster and tote bags.

It all started when I saw some quiet books on the Internet and couldn’t resist making these cute and colorful books for my kids. We were after all, going on a long vacation and I needed something to keep them occupied especially when going to places where the tablet just wasn’t  convenient. Very soon, friends and acquaintances saw how adorable and engaging these books were for my kids, they decided to place orders for their own children. A friend of mine, who is a teacher to special needs children has strongly suggested that I introduce my books to the special needs community. She feels that the book will supplement and encourage some developmental skills. My book certainly helps children learn some skills while at play; and above all, keep them occupied.

Quiet Books from Oxcraft
Quiet Books from Oxcraft

If you haven’t heard of quiet books, allow me to introduce them to you. They are basically books made from cloth or felt, in my case I use felt. They are filled with activities that help improve a child’s cognitive and motor skills, shape, color and number recognition, early counting, sorting, sensory play and sequencing. They also encourage pretend play. It’s a book without words, i.e. you don’t need to read out any instructions to them. The page’s activities are very straightforward so that a young child, who hasn’t learn to read yet, is able to play with it immediately ( of course under some parental guidance). The advantages of the quiet book is that it really engages the child, using all their fingers, being able to physically feel the object, actually actively playing with them. With the tablet, they only use but one finger to move items or to passively listen and play. Plus, it is quiet – no funny voices or music (although in many cases entertaining from the tablet) which can sometimes overwhelm the child or put simply, not handy in certain places where silence or quiet play is intended.



My quiet book with pages that improve the motor skills include activities such as buttoning, zipping,  hooking, clipping, weaving and  moving one object to another. Think of pages with buttoning spots to a large mushroom, or hanging laundry, or putting cookies in the jar, or harvesting fruits. There are pages with double-sided puzzles, and tic-tac-toe to improve cognitive skills. I also make pages with abacus, or completing a pizza or clock for number recognition and counting. I have sort and match pages with colorful ladybirds and shapes. Then

Quiet Books from Oxcraft
Quiet Books from Oxcraft

there are pages that teaches the child basic sequencing  like making a caterpillar or placing stones across the river to help an animal cross over it.

I also make quiet books for babies as old as 18mths. These books are more sensory play. And as children of this age still tend to feel with their mouth, I attach the pieces to the book so to prevent choking or losing them altogether. So there are pages with a lion or jellyfish where the child can feel its mane/tentacles, or a page filled with nothing but all types of buttons, or making a fish/rocket race, or peek-a-boo page where animals are hidden behind tall grass, or a garden/forest page with plenty of things to touch and feel.

Quiet Books from Oxcraft
Quiet Books from Oxcraft

When I make my books, I use my children as my point of reference. I check to see if they find the activity interesting, and whether it is too easy or difficult. All my books are 10pages long, in half A4 size. I find it easy to carry in my “mummy” satchel. Because I hand make each book, no two books are the same. You can either leave it up to me to create a book for you, which I will include a whole range of activity skills set, OR you can look from my Facebook page and tell me what you prefer in your book. Each book cost €35 before shipping (€6 p/book).

If you think you might like my book, please visit my Facebook page at www.facebook.com/oxcraftshop or simply look up “OxcraftShop” under Facebook search. You can also directly email me at oxcraftshop@gmail.com. Quote “QB10” before 31 August 2015 to receive a 10% discount on your book order.

 

Quiet Books from Oxcraft
Quiet Books from Oxcraft

A survey for adults with autism about relationships. Please take part


Claremont McKenna - Autism Research
Claremont McKenna – Autism Research
We are a team of researchers from Claremont McKenna College (Department of Psychology), UCLA (Department of Psychiatry), and California State University Long Beach (Department of Psychology). We are very much interested in better understanding the lives of adults with Autism Spectrum Disorder (ASD). In particular, we are interested in learning more about romantic relationships in adulthood and how they affect other aspects of adults’ lives. For this study, we have created a questionnaire that will take approximately 30-45 minutes to complete. We are greatly appreciative of any volunteers on the autism spectrum willing to complete the questionnaire.

There is little existing research investigating romantic relationships among adults with ASD and we hope that by conducting this questionnaire we will learn more about this important part of life in adults with ASD. This could help us understand the role of romantic relationships and their impact on daily lives.

Here is a link to the questionnaire: https://claremontmckenna.co1.qualtrics.com/SE/?SID=SV_8vjRZZ3gyCKlQTX

For specific questions, please feel free to email us at: Lindsey.Sterling@csulb.edu

Thank you for your time!
Lindsey Sterling, Siena Whitham, and LillyBelle Deer


What is Leukaemia? Read our frequently asked questions blog and find out about the ‘Call on Us’ campaign


Manos Nikolousis
Manos Nikolousis
A leading UK blood cancer charity is ringing the changes for how we seek help in times of need, urging people to avoid putting their mental health at risk by ditching screen support in favour of the telephone.

Leukaemia CARE has launched its ‘Call on Us’ campaign, which encourages patients, relatives and friends to pick up the phone and chat through how they are feeling about the impact of blood cancer on their lives, rather than relying on the internet.

The campaign comes after the charity noticed the number of calls to its Care Line drop by more than half in four years, despite 40,000 people being diagnosed each year with a blood cancer or allied blood disorder, with the commonest ones being leukaemia, lymphoma and myeloma.

However, with respondents to a poll1 admitting that they were kept awake at night by worries including whether they were going to die (54%), how quickly the disease would progress (63%), whether the disease would affect their quality of life (44%) and how their family will cope with their diagnosis (44%), experts at Leukaemia CARE say that it is only through verbal contact that those touched by cancer can have their fears properly allayed.

They are also concerned that the general public are using the internet to self-diagnose with 85% saying they have looked up symptoms online. As a result of doing this, 38% say the wrong diagnosis made them panic and stressed them out, 32% wished they had never done it as what they read on the internet made them feel they had something serious when they didn’t and 29% would never Google their symptoms again, concluding it’s much better to just go to the GP.


To show our support for ‘Call on Us’ campaign PatientTalk.Org conducted an interview with Esther Wroughton (care director at Leukaemia Care) and Manos Nikolousis who is consultant haematologist at Birmingham Heartlands Hospital.

Question: What is Leukaemia?

MANOS NIKOLOUSIS Leukaemia is a form of blood cancer which mainly affects the bone marrow of the patients. Within the term Leukaemia there are different sub groups of leukaemia. It is a broader term that comes from the Greek word where ‘leuk’ is ‘white’ and ‘aemia’ is the blood so it means a cancer of the white blood cells which are part of the blood cell which circulates our vessels.

Question – How is this different from lymphoma?

MANOS NIKOLOUSIS Lymphoma is considered a blood cancer, however, in most of the cases it actually starts from the Lymph glands. In our body we have different Lymph glands in different places (in our neck, armpits, within our chest, within the abdomen and the groin). The Lymphoma usually tends to start from the Lymph glands however occasionally they can spread to the bone marrow or they can spread to other organs as well.

Question – what are the signs and symptoms for both?

MANOS NIKOLOUSIS As leukaemia usually affects the bone marrow, this is related to problems with the production of the blood cells from the bone marrow. Within the bone marrow there are three different types of cells; there are the red cells which actually carry the oxygen to the different tissues, there are the white cells that fight infection and there are also the platelets that prevent anybody from having bleeding or form the blood clot when we have a wound. When a patient gets leukaemia all of these three different cell lines can get affected at the same time (or one more than the other). Therefore the symptoms you can get are tiredness (because of the reduction of red cells and this is directly related to the anaemia), infections that can sometimes be life threatening (because of the under production of and the low quality of the white cells) and because there might be some bleeding problems either in the form of bruising around the body or even like nose bleeds or mouth bleeds so these are the main symptoms of leukaemia.

With lymphoma it is a slightly different situation where you might not have any symptoms and you might notice a swelling around the neck for example. There is a range of symptoms where patients can get nights sweats, weight loss and sometimes if the lymphoma is spread to the bone marrow they can get symptoms similar to the leukaemia.

In both these conditions there are generic symptoms that patients can get like tiredness and often describe their condition as being under the weather. Until you do all the tests then it’s hard to diagnose the symptoms and that’s why from a clinical perspective it is really, really important to really listen to your patient and try to understand their symptoms when they come to your clinic.

Question – Is the NHS up to speed on cancer patient diagnosis?

MANOS NIKOLOUSIS We are certainly getting better and of course this is actually shown by the amount of blood cancer diagnosed per year and there is a gradual increase year by year. We do get better at diagnosing these blood cancers and also in giving patients the right treatment and getting the best outcomes for the patients.

Question – Do you think there is room for improvement and if there is how can it be improved?

B- There is always room for improvement. Over the last 10 years, for example, for leukaemia’s and lymphomas there is a new sort of molecular markers, there are new prognostic markets and we know the patients. We can identify the patients who are not going to do very well and you can identify the treatment for these patients. Equally for those who are expected to do better we can actually give them a less intensive treatment and therefore try to minimise the risks from the treatment. We are much better in offering the patient the best care. There is certainly room for improvement there will always be, that has been shown over the last 20 years in haematology so with all of these diseases there was a massive improvements in their outcomes, a massive improvement about the risk specifications for these patients.

Question – How effective are the treatments in the NHS compared to those in Spain?

MANOS NIKOLOUSIS I am not aware about the Spanish healthcare system but within the NHS over the last three years with introductory of the cancer trust fund there is actually more efficient drugs and more novel treatments which are available in other European countries. Also the NHS is one of the healthcare organisation where clinical trials are important and within the clinical trials you can get all the novel drugs. This allows us to see whether certain treatments work better than the previous treatment. I think the clinical trial portfolio within the NHS is a fantastic opportunity for the patients to get the novel treatments along with the cancer trust fund that is still open for the NHS treatment for the cancer care for the patient .

Question – What are your major criticisms of Cancer policy in the UK?

WROUGHTON There are a lot of questions about cancer policy in the UK going on nationally with the cancer reforms and cancer policy. I think that will become apparent throughout our news channels and we will find out a bit more about this throughout the year.

Question – Why do people use the internet for diagnosis?

WROUGHTON We all use the internet, we all go onto google and search for things whether it be for shopping, to look up symptoms etc. Leukaemia Care carried out a survey which highlighted that 85% of the population go online to look up their symptoms. There is a trend to self-diagnose and to get support online. When searching for some information about your symptoms on the internet, I think there can sometimes be a risk of putting two and two together and coming out with 45 and it worries you but likewise it could have the other affect where you think you have got something with a lesser effect and don’t get that prompt medication attention.

Therefore we are launching our ‘Call On Us’ campaign to highlight the importance of actually talking to somebody, picking up the phone and making that call. The internet certainly has its place; it is great for getting factual generic information but it is not specific to the individual and it can’t give you that personal touch and ask you how you’re feeling today. Your symptoms may be different day to day. The impact of a blood cancer can affect not just the patient but carers and family members as well.

Question – Do you think that one of the reasons people are self-diagnosing is to do with massive wait times at GP surgeries?

WROUGHTON Potentially, I think that’s a good point but I also think that when we are at home in the evenings we can easily go onto out iPad, our mobile phones and digital devices. It’s important to be aware that you are not getting specific tailored information for the individual. It’s not targeting emotional feelings, emotional impact or making sure they are getting the right information at the right time and actually powering the person.

Question – Do you think that people are not picking up the phone because they don’t want to relay personal details to someone they do not know at the other end of the line?

WROUGHTON I think that everybody is different – some people actually prefer talking to someone on the phone, others prefer sending an email or accessing our live chat online service. We do have various services so that everybody can access our organisational services across the board. In our recent survey, it is quite worrying to know that 54% of blood cancer patients were actually kept awake at night worrying that they were going to die, 63% were worrying about whether their diagnosis would progress more quickly and how that would affect their family members.

I think initially people can be worried about picking up the phone but once they do ring our Care Line they actually find they are speaking to someone who knows what they are going through, someone who has been there themselves or are a carer of somebody who actually has a blood cancer. Often we find that the feedback that we get back from the care line is that people do find it an invaluable service, they can actually be put at ease and they find it valuable to have that one to one contact which really does relay their fears when they get that appropriate advice.

Question – What advice do you give to somebody with leukaemia?

WROUGHTON Pick up the phone and call our care line. It is like having a conversation with your friend – you will get that personal touch. They will ask how are you feeling today, is your diagnosis affecting your work, do you need financial assistance, do you need more appropriate medical advice or more information on your diagnosis? We have medical writers creating our booklets which gives patients and family members access to information.

I think what’s really important is that when people go to the hospital or go to see their G.P they are sat there really worried, they ask certain questions or they may come away with things that they have forgotten to ask or they didn’t take on board the information that had been given to them. They can get home and find that they’ve got questions in the middle of the night, in the evening times or in the morning when they wake up. The Care Line allows patients and carers to speak to somebody and we are available 24 hours a day 7 days a week.

mumsnautism.net – Dorly O’Sullivan tells us her autism blog in this fascinating guest post.


http://mumsnautism.net/
http://mumsnautism.net/
As many of you know one of the objectives of PatientTalk.Org is to spread the word about different healthcare blogs. You know the ones written by the real experts (ie us) not being barked at my healthcare professional who knows little about our lives once they clock off in the evening.

Do today I am delighted to introduce a new blog called mumsnautism.net by Dorly O’Sullivan where she writes about the experience of being a parent with a child with autism. You can read O’Sullivan’s blog here.

She writes ” There are a lot of “us” out there. Parents, carers and other family members who live with young adults who are in the Autistic Spectrum (ASD) or have a dual diagnosis of Down Syndrome and Autism (ASD DS).

We want to protect our young people, or even not so young people. So there are things we don’t talk about. We don’t talk about antisocial behaviour, and we don’t talk about aggressive behaviour.

This doesn’t help our people, and it doesn’t help us. In order to find new ways, we have to face up to our challenges and accept them for what they are. Talking about it, sharing our experiences will empower us, and this in turn will enable us to find new ways to help or young people not to become even more isolated than they already are.


Let’s talk. And listen.

The idea of writing a blog came to me after reading an article in the Weekend Review of The Irish Times, May 30. 2015, by Rosita Boland, “Linda and Jake”. Linda’s son Jake has ASD and I think he is about 14. Linda feels very alone with her issues. One of them is aggressive behaviour. She says, “I wish people would talk about aggression”, and I agree with her.

Living with autistic people who display aggressive behaviour is a form of domestic violence, even if the perpetrator is not to blame and we love him / her to bits. It still hurts. We still have to find a way to live with it. Aggressive behaviour outside the home is limiting a good social life enormously for the young person concerned.

Other people will have other issues.

Let’s talk. And listen.

I’m not a professional. I’m a mum. I can only tell you about my experiences with my son. I would love to hear about your experiences, whether you are a mum or a dad or a carer or a family member. I would love to hear about your experiences, if you are a person with ASD. There is a great range in intellectual abilities in people with ASD, my son happens to be at the lower end of moderate intellectual disability, he cannot tell me anything verbally. But others can. I want to help him to have a fulfilled life. He can’t talk, but he can feel, he can experience. Just like the rest of us.

My stories are about my son, not about aggression. But aggression is a part of it.

My hope is, that the blog will eventually develop into a forum.

What is your story?”