Invisible Disabilities – the Facts and Figures

One of the objectives of this blog is to help raise awareness of various different medical conditions. Especially those which are less well and often invisible to most people. So when Izzy asked me if I would like to share this infographic I was delighted to do so.  It gives a useful overview of some of the main conditions including Chronic Fatigue Syndrome, Lupus, Complex Regional Pain Syndrome, Fibromyalgia, Multiple Sclerosis, IBD, and Lyme disease!

You can read the original here.


Invisible Disabilities

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

Optic Neuritis – what treatments have you received for optic neuritis? Take our poll

Optic Neuritis

Optic Neuritis

For many of us optic neuritis is one of the first symptoms that present for multiple sclerosis.  You may be interested in a previous blog we ran where many of our readers told their optic neuritis story.  You can read them here https://patienttalk.org/?p=312.

That being said their are a number of other conditions which can also lead to optic neuritis.  These include syphilis, Lyme disease, herpes zoster, lupus, neurosarcoidosis, inflammatory bowel disease, vasculitis, and diabetes.

Today we would like to explore in more detail the treatments people have received for optic neuritis.

It would be great if you could take our poll below to share your experiences.

Feel free to use the comments box below to add anything you think may be of interest to our readers.

Thanks in advance



Urgent advice for pet owners as health experts warn of spread of Lyme Disease

Watch our video for advice from David Bellamy on how to spot potentially deadly ticks onlogo_jungle_black_403x108 your dog and how to keep yourself and your family safe

As experts warn of the rapid spread of Lyme disease across the UK because of an increase in ticks, protests and public events are taking place around the world, including at Whitehall, to illustrate the lack of awareness about the disease and how it is spreading here.

Lyme disease is the most common tick-borne disease in the Northern Hemisphere  and there are concerns in the UK about the lack of public awareness, given recent warnings by leading animal health experts and parasitologists about aconsiderable increase in the disease-carrying tick parasite, posing a growing health threat to humans and their pets.

The tick parasite which is commonly found in long grass and areas of dense vegetation, attaches itself to dogs, cats and humans. In the past, ticks were only considered a hazard in select parts of Britain at particular times of year. But because of our changing climate they are now prevalent year-round, across the country.

Lyme disease in humans has increased threefold over the past decade, with up to 3,000 cases of Lyme Disease estimated to occur every year in people in England & Wales according to The Health Protection Agency.


A recent study from Bayer Animal Health as part of their ongoing ‘It’s a Jungle Out There’ parasite awareness initiative reveals that more than one in ten pet owners surveyed have found ticks on themselves or a family member, and that 53% of pets are not treated for this parasite.

The tick parasite uses highly developed mouthparts to pierce the skin and feed on the blood of its host. In humans, the first sign of Lyme Disease is commonly a circular rash around the area of the bite, and symptoms include fever, muscle and joint pain, tiredness and headaches.

So how can you keep your dog, yourself and your family safe?

To help pet owners understand the dangers of ticks and other parasites Bayer Animal Health have produced a series of short films featuring botanist David Bellamy, TV vet Steve Leonard and an array of parasite experts. This video focuses on the risk from ticks.

Pet owners can also find information about the most common parasites in the UK at www.itsajungle.co.uk, where they can complete an online risk assessment. You can help spread the word by liking ‘Jungle for Pets’ on Facebook or by following ‘JungleForPets’ on Twitter.

 

TICKS: The facts

  • A tick is a small, blood sucking   arthropod
  • Normally ticks live on blood from larger animals, like deer, but they may also attach themselves to dogs, cats and even humans.
  • Ixodes ricinus is the most common tick in the UK and Ireland
  • Ticks lie in wait in vegetation and attach themselves to their host as it  brushes  past
  • Ticks have highly developed mouthparts, which allow them to pierce a hole through the skin to feed on blood
  • They can cause reactions at the site of attachment
  • Ticks may cause anaemia if there is a severe infestation on a young animal
  • The most important risk associated with ticks is the diseases they can transmit, eg. Lyme Disease in the UK  and Ireland.
  • Up to 3,000 cases of Lyme Disease are estimated to occur every year in people in England and Wales, according to The Health Protection Agency
  • Diseases such as Babesiosis and Ehrlichiosis can be transmitted to pets travelling abroad, therefore regular tick treatment of travelling pets is important