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Posted by on Jun 24, 2013 in Uncategorized |

Video Tour

Welcome To The Me & My Mast Cells Site

Please watch this video tour, specially prepared to help you get the most out of our website.

Enjoy!

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Welcome

Hello and welcome to this short video tutorial on how to use the meandmymastcells.com website.

Introduction

meandmymastcells.com is a repository of information about mastocytosis.

This site is mainly intended for newly diagnosed patients, as information about mastocytosis is still scarce on the web.

However, for already diagnosed patients, the site aims to help you understand the medical concepts necessary to make sense of the medical research articles.

Poring over medical articles has become a necessity for patients of mastocytosis as, for this disease, the patient is very much in the driver’s seat, with the General Practitioner or Primary Care Physician becoming a trusted co-pilot.

We will keep updating the site with new medical research, news, explanations of medical concepts and the like.

Emergency Area

First things first, there is the emergency area, where you will find documentation you may require during emergency visits to the hospital.

There are two documents to guide you and your anesthetist on safe anesthesia practices for patients with mastocytosis, and two documents with guidance to ER personnel.

The emergency menu is conveniently located in the top middle menu position and highlighted in red.

Legal & Disclaimer

The next important item is the disclaimer, please do read it. It essentially says that, everything you read, see or hear on this site needs to be taken with a pinch of incredulity, and that I am not a doctor, and that you should talk to your doctor and yada, yada, yada.

You know the drill.

And also for legal purposes, let me point you to our contact form, privacy policy and notice to copyright holders, saying that if they believe that I have stretched the scope of fair use and posted something they dislike, that I’m very willing to take it down at their request.

Disclosures

Please note that this site has no commercial intent whatsoever, so there are no financial disclosures. We are not affiliated to anyone. As this is just a patient’s carer information repository, there are no conflicts of interest disclosures either.

Forum

Before I forget, let me point out that this site has an adjunct forum, where the topics are neatly organized so that your contributions are easily retrievable.

I encourage you to sign up and contribute to the forum, as forums are the best way to communicate between patients and carers alike.

Navigation Features

This site contains a lot of information. We have tried to make the navigation as easy as possible.

In order to expose as much content as possible on one page, we have divided navigation into three menu levels, top, middle and bottom. Some menu items will have sub menus.

Additionally, there is a category menu on posts other than the front page and each category leads you to separate areas of interest.

It is easy to believe that the front page is all there is, but this site has incredible depth to it, so we encourage you to browse around and enjoy the detail.

If at any time you wish to return to the Home Page, click on the prominent blue me & my mast cells title or on the grey home icon in the bread crumbs on every post.

The Glossary

One of the significant benefits of this site is the automated glossary feature. In any post, hover over the words underlined with dotted lines and a Netflix-like popup will appear giving you additional information about that word.

Most difficult medical terms are thereby hopefully de-mystified without disrupting your reading flow. We have tried to make the explanations as simple as possible.

At the time of launch, the automated glossary contains over 320 terms. We anticipate that it will grow to well over 800.

Media-Richness

A picture is worth a thousand words.

A video is worth a million words.

A good descriptive video animation is priceless.

So we have made this site as media-rich as possible. There are over 40 videos and animations, along with numerous pictures. This number will grow considerably in the near future.

Tone-Of-Voice

We have used a peculiar tone of voice which may offend some readers. Fear not, it’s not like Mickey Mouse peculiar. We have attempted to lighten the mood by being occasionally humorous, sarcastic or controversial.

This may not sit well with some of you. If you take umbrage, I hope you will see the wood for the trees and focus on the message rather than the delivery.

At no time do we mean to be glib or disrespectful. Believe me, we understand what you are going through and have the deepest respect for your ability to cope with this debilitating disease.

Top Menu : About This Site

If you are interested to know how this site came about, please read my partner’s Ann story. It is quite a typical (and eventful) scenario for mastocytosis sufferers.

As for my story, suffice it to say that never, ever, in my wildest dreams did I contemplate that I would be creating an information site on a rare disease, especially as I have not the slightest medical or scientific background or training.

Top Menu : FAQS

Please follow The FAQ link to get point answers to simple everyday questions you may have about this disease.

Top Menu : Resources

You will find a sub menu, offering a list of useful information sites, product sites and support sites.

Also, you will find alphabetical index of over 200 medical articles on, or related to, mastocytosis.

The abstracts of these articles are also available on the site, with the added-value benefit that the automated glossary makes the reading of these abstracts much easier for common mortals. For each abstract, there is a link to the full text, with a flag telling you whether the full text is available for a fee, or is available for free.

As medical articles are littered with abbreviations, we have collected the more common abbreviations and their explanation. This should be helpful if you read medical articles which are not on this site.

And lastly, a link to the site’s automated glossary is available

Center Menu : General

The center menu mirrors to some extent the home page.

The menu points to:

  • The Basics
    • Basic concepts needed to understand the condition
  • The Symptoms
    • Essentially, expect the unexpected
  • The Tests
    • What procedures are needed leading to …
  • The Diagnosis
  • The Treatments
    • Explains what the treatments are and how they work
  • The Drugs
    • Their use, and side effects
  • The Doctors
    • Doctors presumed to know how to treat the condition. We have not personally vetted these physicians and do not vouch for their capability. You should perform your own due diligence. A link is provided to the physicians profile, as well as the source of the referral, if one is available, and a link to the doctor’s publications, if they exist.
    • Clicking on each one of the menu items will bring up all the articles in that category, so expect a longer response time as the system collects all the articles.

Center Menu : Other

The Deep Dive menu will lead you to the following sections

  • Explain To Me (detailed posts on medical topics)
  • Genetics (an introduction to genetics)
  • Statistics 101 (an introduction to statistics)
  • Nutrition
  • Q&A (more detailed than FAQS, less detailed than Explain To Me)
  • News (medical research news)

Main Section Of Home Page

The main section of the home page shows, under each category, the individual articles which are available.

Clicking on one of the articles takes you to that specific topic. This is a much faster way to get to a topic of interest, rather than clicking on the category menu, as the latter will display all the articles in the category.

Below the main home page section, you will find a selection of featured videos. Followed by a selection of the most recent news articles.

Live Video Streaming

The site contains the necessary infrastructure to organize real-time video webinars using Google Hangouts. You do not need a Google account to participate.

If you believe you have a structured presentation or expertise in a particular area you’d like to present to members, please let us know and we can certainly facilitate this.

Please note that such presentations cannot be used to sell products or services. However, it is acceptable to introduce such products or services if they are ob clear benefit to members.

Guest Blog Contributions

We will gratefully accept guest contributions on any topic you may claim expertise on. As already mentioned, the mastocytosis topic is relatively new to us and we are still learning. We could do with much help to improve the content of the site. You would thereby be contributing to the education of those who do not yet have your level of expertise.

Conclusion

This concludes the brief tour of this site.

If you think this site could be of benefit to others, please share the site's information  on social media, using the appropriate buttons on each of the individual posts. Also, please join us on Facebook, Twitter or Google plus by clicking your preferred network in the top social media buttons.

Finally, please let me remind you of the forum. Unless you contribute to the patient community, through this  or any other forum, many of us will be left to our own devices.

Remember how it felt when you were in that situation. Please help.