rheumatoid arthritis

1 Comment Posted on February 13, 2014September 13, 2016 autoimmune conditions

Autoimmune conditions! How many auto-immune conditions have you been diagnosed with?

Autoimmune disease awareness

Having worked in healthcare for nearly ten years (first as a research now as a blogger) I have always been interested in what we can call the diagnostic profile of people with autoimmune conditions.

To get an overall introduction to autoimmune conditions please check out this article – https://patienttalk.org/autoimmunity-what-actually-is-an-autoimmune-medical-condition/.

One of the areas that interested me was that there does seem a strong pattern of people who have one autoimmune condition such as fibromyalgia developing another like lupus or rheumatoid arthritis.

I think it is worth quantifying this further so I am running a short poll to find out how many different autoimmune conditions each of our readers have been diagnosed with.

It would be great if you could use the comments box to share which autoimmune condition these are! Many thanks in advance.

1 Comment Posted on January 30, 2014January 30, 2014 Arthritis, Patient Talk

Did you know that there are more than one type of arthritis? Which type of arthritis do you have? Please take our poll.

Arthritis

Before I got involved in medical market research I was under the impression that there was arthritis and there was rheumatism. And that they were pretty much the same thing.

It was just a few days into that job when I discovered how wrong I was. Indeed I’d never even heard to Fibromyalgia or Lupus in those days. Which is pretty poor form given my grandmother suffered from Rheumatoid arthritis for almost all her life.

So I thought it would be useful to find out more about the types of arthritis that our reader have been diagnosed with. With this in mind I have set up a new poll. If you do have an arthritic condition it would be great if you could take part.

This will also help us to make sure future blog posts on arthritis are relevant to our readers

Thanks very much in advance

1 Comment Posted on January 27, 2014February 28, 2014 Patient Talk

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

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.

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

Leave a comment Posted on December 13, 2013December 13, 2013 Arthritis, Patient Talk

Rheumatoid Arthritis is not just Arthritis -The PatientTalk.Org Advent Calendar Day 13 – please like and share

Rheumatoid Arthritis is not just Arthritis

Leave a comment Posted on December 12, 2013February 28, 2014 Patient Talk

Vasculitis – inflammation of the blood vessels. How it can affect you and your loved ones. Help us raise awareness of Vasculitis.

Vasculitis

In my previous life as a healthcare researcher I had the dubious honour to be introduced to a set of conditions called Vasculitis.

At the time we were doing work with people who had various rheumatic disorders such as rheumatoid arthritis and systemic lupus erythematosus. Vasculitis, it seemed, was in some cases one of the symptoms of those conditions.

So for some time I have thought it would be of use to run an informational blog on the subject of Vasculitis. It is rare – around 15,000 people in the US are diagnosed each year.

So what are the main symptoms of Vasculitis?

1) A combination of fever and weight loss seems to be the main symptom.

2) Purpura – or purple discolorations of the skin.

3) Myalgia or muscle pain.

4) Heart attacks.

5) High blood pressure.

6) Sight loss.

7) Nose bleeds and bloody coughs.

As we said there are a number of different conditions making up Vasculitis. These include Polymyalgia rheumatica, Takayasu’s arteritis, Temporal arteritis, Buerger’s disease, Cutaneous vasculitis, Kawasaki disease, Polyarteritis nodosa, Behçet’s syndrome, Churg–Strauss syndrome, Cutaneous vasculitis, Henoch–Schönlein purpura, Microscopic polyangitis, Wegener’s granulomatosis, and Golfer’s vasculitis.

Getting good and straight forward information on Vasculitis is not as easy as one would hope. Many of the web sites dealing with the condition seem to be aimed at healthcare professionals rather than people who suffer from the condition. So we thought it would be useful to open up the comments box to people with Vasculitis to share more about their experiences.

You might wish to consider the following questions when framing your comments:-

a) When were you diagnosed with Vasculitis and what type of Vasculitis do you suffer from?

b) What are your main symptoms?

c) What caused you Vasculitis?

d) How have you been treated and to what extent has the treatment been successful?

e) How has Vasculitis impacted upon your lifestyle?

f) What one piece of advice would you give to somebody who has just been diagnosed with Vasculitis?

If you have any links you wish to share that would be great as well.

Please use the comment box below to share any thoughts with our readers.

Many thanks in advance