Get informed about Graves Disease – Help spread awareness

 Graves Disease

Graves Disease

Find out about Graves Disease and help raise awareness of this autoimmune condition which affects the thyroid. The normal enlargement is called goitre.

This leads to hyperthyroid symptoms such as increased heartbeat, muscle weakness, disturbed sleep, and irritability. It can also cause bulging eyes .

Spread Congenital Heart Disease Awareness – Share Donnee Spencer’s brilliant graphic

 Congenital Heart Disease

Congenital Heart Disease

While PatientTalk.Org is on vacation each day we will be sharing a Donnee Spencer medical awareness image.

Today we are featuring Congenital Heart Disease.

Please like and share to help us spread awareness.

This blog is now on vacation – we return on 30th October 2014



If you need to get in touch we may get messages at

World Thrombosis Day Shines Spotlight on Deadly Blood Clots – Read our interview with Dr Hillary Jones on Deep Vein Thrombosis

Dr Hilary Jones on Thrombosis

Dr Hilary Jones on Thrombosis

Last Monday 13th October saw World Thrombosis Day 2014.  To mark the day we conducted an interview with Dr Hilary Jones on the subject of Thrombosis.

But did you you know this seven important facts about thrombosis?

1) Sitting at a desk, in a car, or a train for just a 90 minute period of time can reduce blood flow behind the knee by 50%, increasing the risk of thrombosis – a blood clot
2) Other risk factors: Major surgery, such as orthopaedic or surgery for cancer, or extended time in the hospital, heart diseases, pregnancy, smoking, hormone therapy, being overweight/obesity, dehydration, family history and cancer
3) Deep vein thrombosis (a blood clot in the leg) or a pulmonary embolism (a blood clot in the lung) kills one person every 37 seconds in the western world (1,2) – in England more than one in 1,000 adults could be affected by blood clots every year (3)
4) Blood clots can also travel to the brain causing strokes. These types of clots occur in people who have atrial fibrillation (an irregular heartbeat) – a condition which affects over one million people in England (4)
5) New data reveals that 75% of people in the UK wouldn’t know what to expect if they experienced a blood clot in the lungs (5) – highlighting the need to raise awareness of the signs and symptoms of thrombosis

6) itting at a desk, in a car, or a train for just a 90 minute period of time can increase the risk of thrombosis – a blood clot
7) There are a number of effective treatment options available to treat and prevent blood clots

The interview was conducted bu Antonia Lipinski on behalf of PatientTalk.Org.

Lipinski So what actually is DVT and why is it so dangerous?
DR JONES Well DVT stands for Deep Vein Thrombosis. This means that a blood clot forms in the veins which lie deep in the tissues of the body and this particularly affects the calf muscle veins. When people complain of pain and tenderness in the calf with swelling and redness it could be that they’ve got Deep Vein Thrombosis. The significance of Deep Vein Thrombosis is this that it is a very common disorder and it can have far reaching consequences. If a piece of the blood clot should break off into the circulation and be carried onwards towards the heart and lungs its means its can cause a pulmonary embolism. That is part of a clot that has broken off and has lodged in the lungs obstructing the oxygenising of blood and that can have very serious consequences and leads to a fair number of deaths every year.
Lipinski Who can get it?
DR JONES Well all most anybody can suffer from deep vein thrombosis. We know that it is more common with age but a young person who has had an injury, somebody who is having surgery, somebody is pregnant and somebody with a family history or a previous history of blood clots because some people have a genetic predisposition towards forming clots in the blood. All of these people, people who smoke even are more prone to blood clots so nobody is immune from blood clots and every 37 seconds one person in the Western world dies from a blood clot so that’s how significant it is.
Lipinski How is it treated?
DR JONES Well we know that we can to some extent we can prevent blood clots in people before it has actually happened. For example if somebody is having surgery we use compression stockings to increase the blood flow through the veins and prevent the stasis which occurs during the operation but more often then not somebody who has a deep vein thrombosis or pulmonary embolism we prevent further occurrences. We treat them. We anti coagulate them. PATIENTTALK.ORG Do flight socks actually work?
DR JONES Yes if they are up to the back of the knee and they are compressing the veins significantly. When someone is on a long haul flight, just as any kind of inactivity would do, it increases the blood flow through the veins and prevents the risk of blood clots so they really do help just as they do in a hospital setting or in anyone who is inactive and immobile for several hours at a time.
Lipinski How is PE different from DVT?
DR JONES Well a pulmonary embolism is where the blood clot breaks off from the leg and is carried up towards the lungs and blocks an artery which the feeds the lung with blood that is ready to be oxygenated. So somebody with a pulmonary embolism will be short of breath. They’ll have chest pain. They’ll have an increased heart rate. They might even cough up some blood and feel light headed. Also they might have no symptoms at all in the early stage as my brother didn’t when he had multiple pulmonary embolisms. Now he is a fit guy. He is an oarsman who rows to a very high standard and he had an abnormal collection of blood vessels in his thigh which he didn’t know about and he wondered why he was a bit more breathless when he was ain a rowing race. He saw a friend who happened to be a cardiologist who recognised the signs straight away. He was treated successfully and those abnormal blood vessels were removed. As I say anyone can be affected and the pulmonary embolism is much more serious because in many cases it can prove fatal if not treated quickly.
Lipinski What lifestyle changes can we make to prevent DVT?
DR JONES I think the first thing is to stop smoking because this thickens the blood and makes it stickier so blood clots are more likely to form. So giving up smoking is a really good step forward. Losing weight or normalising weight so you are not carrying too much weight is good. Reporting any kind of injury around the calf muscle particularly is important. Exercising on a regular basis because when you are using your leg muscles they are pumping and compressing in a rhythmically way the blood vessels underneath the muscle so the muscle pump is a good way of preventing blood clots and improving blood flow. So exercise, giving up smoking and just taking care of yourself are all important, normalising weight, these are all important. Probably nothing more so then recognising the signs and symptoms of DVT. It would be pain and tenderness in the calf, swelling of the ankle and foot, redness in this area, dilution of the surface veins so the veins look more prominent and an increased warmth compared to the other side. It always a good to compare the affected leg to the other side and if you have any doubts at all go and see your doctor and say could this be a DVT.


Further regional statistics on people diagnosed with DVT and PE in England 2010/11 can be found at:



1. Cohen AT et al. Thromb Haemost. 2007; 98 (4):756-764;

2. Roger VL et al. Circulation. 2012; 125(1):e2-e220

3. From prevention to treatment; taking the pulse of NHS services. Bayer HealthCare. November 2013

4. AF Association, A Guide to AF within the Cardiovascular Disease Outcomes Strategy. December 2013

5. Data on file Bayer HealthCare. Global online survey conducted in over 20,000 adults aged 18-64 between 17th July-11th August 2014. UK sample size 1,000 adults

6. International Society on Thrombosis and Haemostasis. World Thrombosis Day. Available at: Last accessed October 2014

7. Patient UK. Deep vein thrombosis. Available at: Last accessed October 2014

8. Turpie AGG et al. BMJ. 2002; 325: 887-890

9. NHS Choices. Causes of deep vein thrombosis. Available at: Last accessed October 2014

10. Mayo Clinic. Deep vein thrombosis. Available at: Last accessed October 2014

11. Life Blood, the Thrombosis Charity. Reducing the Risk of Thrombosis.

Respiratory Care Week- A week that honors respiratory therapists and promotes lung health.

COPD Awareness

COPD Awareness

Normally awareness weeks have the objective of helping people find out about various different medical conditions.

While of course Respiratory Care Week is about promote lung health. (It really is time to give up smoking!) It also honours the work of respiratory therapists!

Respiratory therapists are healthcare professionals who specialise in supporting patients with lung related conditions such as asthma, emphysema, pneumonia, COPD, cardiovascular disorders, and trauma.

You can find out more at the KU Medical Center website.

Because Respiratory therapists are rare in Europe it would be great if our American readers would share their experiences of being treated by these healthcare professionals.

Please use the comments section below to add your story.

World Pediatric Bone & Joint (PB&J) Day – drop round and find out more

World Pediatric Bone and Joint (PB&J) Day

World Pediatric Bone and Joint (PB&J) Day

As readers of this blog will know we have been trying to follow the events and commemoration days which form Bone and Joint Health National Awareness Week. You can find out about the events here.

Today is World Pediatric Bone & Joint (PB&J) Day.  The aim of World PB&J Day is to highlight the impact of musculoskeletal conditions on children and educate healthcare providers and the public about children’s musculoskeletal health issues.

The Adolescent Female Athlete Triad is the theme of this year’s World Pediatric Bone and Joint (PB&J) Day. Developed by the multi-disciplinaryPediatric Specialty Group of the United States Bone and Joint Initiative (USBJI), this is one of a series of educational stories on important bone and joint-related conditions about which kids, adolescents and their parents should be aware. Topics that have been covered include, obesity, slipped capital femoral epiphysis, kids and Vitamin D deficiency.

October is Lupus Awareness Month – Lack of Lupus Awareness is leading to delay in diagnosis say LUPUS UK. What was your experience?

Lupus Awareness Month

Lupus Awareness Month

“What?” I hear you cry October is Lupus Awareness Month? May is Lupus Awareness Month. And yes you would be right but this is one of those moments when the UK like to be different.

You could argue of course that the more awareness the better. And this is certainly the case with an autoimmune condition such as Lupus.

So I thought I would mark the month by letting you know a bit about some recent research conducted by LUPUS UK. They discovered that the average time from the first symptoms presenting itself and finally getting a diagnosis was over seven years. Which means that many people with Lupus were just not getting the treatments they needed to lessen the impact of the main symptoms and to limit potential damage to the kidneys, heart, lungs or brain.

Elyssa a 22 year old Lupus patient commented “”When I was a child my face would present the butterfly-shaped rash whenever I was exposed to the sun. My family GP would prescribe Roc sunscreen and that was that. As I got older I experienced a lot of fatigue and would sleep upwards of 12 hours a day. My GP suggested this was the result of teenage hormones and diet. At 19 a lesion grew on my face which would itch, weep, bleed, scab and peel. In the course of two years I saw three different GPs who all dismissed my symptoms or just prescribed topical antibiotics. It wasn’t until I refused to leave the GP’s surgery that I was referred to the hospital and had a breakthrough. When I met my consultant I was soon diagnosed as having lupus. The lesion started to fade and calm after less than two weeks on medication, and whilst it has scarred, it is ten times better than it was.”

So LUPUS UK has started a campaign along side h the Primary Care Rheumatology Society and The Royal College of General Practitioners to raise awareness amongst Primary Care Doctors such as GPs.

Chris Maker , a director at LUPUS UK expressed his concern about PCP support saying ” we do expect GPs to have an open mind as we know that early diagnosis leads to a better prognosis in most cases”.

I have to say I found this comment very troubling. So I am hoping to get your view. It would be great if you could share your opinions on the following questions?

a) How long did it take you to get a diagnosis of Lupus?
b) How well briefed do you think your family doctor was about Lupus and helping you get a diagnosis?

It would be great if you could share your thoughts in the comments section below!

Thanks very much in advance.

World Trauma Day – Can anyone tell me anything about this awareness day?

World Trauma Day

World Trauma Day

As eagle eyed readers of PatientTalk.Org will have spotted we have been giving a fair bit of coverage to Bone and Joint Health National Awareness Week. You can find out about the events here.

So today as you may be aware is World Trauma Day. While starting some research this morning I came up with nearly nothing.

Actually that is not quite true – the Hindustan Times has produced an excellent article on the day and why it is so crucial in India. Indeed they argue for emergency and first aid training in schools.

Up to 400,000 deaths death year in India could be prevented with better emergency care. While I except that it is a bigger issue in developing nations, without the sorts of infrastructure which you and I seem to take for granted, it beggars belief that it is not considered a big issue in developed nations.

So does anyone know anymore? It would be great if you could share any information you might have about the day. Please use the comments section to share any links and so forth.

PS For our purposes trauma her refers to an injury such as you might receive from a road accident.

Autism and Parenting – Our readers share their Autism Tips!

Autism Awareness

Autism Awareness

As some of you may know we have been running a series called Autism and Parenting. The aim of this set of posts is to provide people in the autism and ASD community with a forum to share ideas of how best to parent children on the spectrum.

We decided to share with you the results of a recent discussion on our Facebook page AutismTalk. Yesterday we asked the page a very simple question “What is your best autism tip that you would like to share with our readers?”. In less than 24 hours we received nearly 500 responses. So naturally we wanted to share some with you.

It would be great if you could share your own ideas and suggestions in the comments section below!

The comment which gained the most likes was Jamie when she said “Nobody is more of an expert on your child than you.” While Justina mentioned “Never underestimate the intelligence of autistic people!”.

Adrian had a popular but important message for fathers of children with autism “Dad’s get involved. Yeah you may have a demanding job, but not only does being involved benefits your child, it benefits you as well. You are also your child’s advocate. Make a commitment to go to as many Dr appointments, to as many therapy sessions, to as many parent invites your child may have at his/her school as you can. You owe it to your child to be just as active as mom is being when it comes to ensuring your child get the best care that he/she can. The burden of raising an autistic child shouldn’t fall squarely on mom alone. Step up!!”

“Never beat yourself up or call yourself a bad parent. From experience, you will have easy days and not so good days. Have patience and get rest when you can. Get as much help and therapy for your child. was Karen’s important message.

Tonya recommended “PATIENCE! It is very frustrating at times to be a parent or caregiver to someone on the spectrum. It is really easy to lose your patience with them at times, but you have to remember that they didn’t choose to be this way!” while Sara suggested “ACCEPTANCE each child just wants to know they are loved and safe. Don’t try to change who they are, try to be more like them “.

Kyle said “Don’t shelter your child. Allow them to find their place in this world rather than protect them from it.”

On a practical note Sherleen said “Triple lock the doors or install alarms if you have an escape artist.” While Amy shared “Use “first this” , “then”….. that works well for my daughter”.

Another said ” Always remember they will see the world and feel the world in their own way ! And it’s ok to be different !”. While yet another reader “Always be prepared and have a good routine to avoid a meltdown“.

Dana suggested this and I have to say I agree “Make them live normal. Teach them right from wrong. Demand appropriate behavior. Teach them to play, imagine. Color therapy, speech therapy, behavior therapy. Autism doesn’t mean, no holds barred. My son 22 had full blown Autism. He’s high function Aspie now. Start each day with clean slate.”

I’d like to end by quoting way more than on reader with a statement which gets my full support “Choose your battles!!”.

So what is your tip?

Why not share in the comments section below.

Thanks in advance.

Life with Fibromyalgia. Tips for living with Fibro from People with Fibro!

Fibromyalgia Awareness

Fibromyalgia Awareness

A few months ago we ran a very successful discussion on our Facebook Page, called FibromyalgiaTalk, entitled “What advice would you give to a person who had just been diagnosed with fibromyalgia?”. We then covered some of the responses in a blog post which you can read here.

The responses were amazing both in terms of quantity and quality so we decided it would be useful to run a similar discussion asking for tips you might have about living with fibromyalgia.

Firstly I’d like to say thank you to the 250 people (so far) who have replied since we started the conversation on Monday. So we would love to share with you a few of the tips . It would be great if you would care to share any of your own in the comments box and the end of this blog post.

“Find a doctor who knows and treats fibromyalgia. Get lots of sleep. Ignore everyone else’s expectations of you and slow down on life. Rest, drink lots of water and TRY to stretch daily. Your friends and family will all give you ideas on what you should do to feel better–it might get annoying—just smile and know they are just trying to help! Hope this helps!!” was great advice from Jennifer!

Brittany was simple but to the point ” Reduce stress as much as possible, take hot baths and time for yourself”

Wendy was very sensible “I had to learn to forgive myself for not being “me” any more, most days I manage it! My usual advice still stands, be kind to yourself, learn how to pace and use the NO word when you need to x”. Another talked about pacing “When your having an almost pain free day and feel good , don’t push yourself because you will pay for it a few days later , sometimes with days of pain …”

One reader shared this great idea for a birthday present “Ask for gift vouchers for therapeutic massage for birthdays and Christmas it hurts a bit at first but you feel so good afterwards. Best present ever x”

Tricia was very practical “Natural Vitamin D3, make sure it’s D3, about 30-50,000 iu a week will make a tremendous difference. Most fibro sufferers are unable to absorb normally and are deficient. Magnesium is good. Take fish oil to go with the D3 and take K2. They enhance each other. Also, heat helps. Hot baths, and extra blanket, and warm sweater. Massages and chiropractic care are definitely a help. Yoga and exercise on your good days. Lastly, rest and reduce stress because these are our biggest triggers along with the weather. Rain is evil. Lol! Take care of yourself.”

And Shell talked about “Do your own research. Believe in yourself & write all of your issues down.”

Which, of course, is one of the aims of this post. So as we said earlier what should be added to this list of tips?

Please use the comments section below to share yours.

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