I make no apology for posting these details out again, even though I have published them a number of times over the years. More and more new purple people join our merry throng and will need to know where to start. If they feel anything like I did back in 2006 when my ITP exploded they will undoubtedly be seeking re-assurance.
Many people on the various ITP social media forums/platforms ask questions about where to get reliable, up to date information about our rare condition. As more new people join our merry ITP band this is something that crops up nearly every day. I get quite a few messages, tweets etc asking me about this very subject.
When I was diagnosed with ITP back in 2006, I found it quite difficult initially, to track down the best places for information, support and advice. Luckily a kindly nurse at my hospital handed me a leaflet from the ITP Support Association and it literally changed my life.
I can assure you that the options back in 2006 were far fewer than they are now. Facebook, Twitter, Linkedin, Instagram etc were very much in their infancy. The thought of consulting somebody called Alexa or Siri would have been complete fantasy.
There are numerous options now available. In some ways that makes things almost as tricky as having less content around. We need to be sure that the information we are getting is accurate, up to date and regularly checked by ITP experts.There is so much information but we need to be sure of the accuracy and reliability.
So for anyone, new to ITP or indeed as a reminder to all us old purple lags, the following list of sources of information is the one that I would start with.
1. The ITP Support Association - UK Registered Charity established 1995 and the first support group for ITP patients anywhere in the World....
2. The Platelet Support Disorder Association - USA established 1998
3.The Global ITP Network
globalitp.org/index.php/pat...
4. ITP in Children - The following link may be helpful specifically regarding ITP in children ....
itpsupport.org.uk/index.php...
5. The ITP Support Association HEALTHUNLOCKED forum - written by ITP sufferers for ITP sufferers. Currently with over 3400 people in the group it is a lively, helpful and comforting place for all of us with this enigmatic condition. I am proud to have set it up back in 2011 and just ask that anyone who does contribute bear in mind that we are looking for positivity, support and encouragement for all.....
USEFUL REMINDER - One thing to be aware of about all of the various forums is that any content and/or suggestions, comments on any of them can never replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them. Always consult with and discuss your case in full with your doctor/specialist or medical professional before acting on anything.
If anybody wishes to follow my ITP story then please feel free to join me on
MyPurplePatch Twitter - @Patch1Purple and/or
My ITP blog - myownpurplepatch - myownpurplepatch.simplesite...
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