My name is Jo and in October 1995, aged 24 and having had a fairly healthy childhood I became ill with what was diagnosed as Thrombotic Thrombocytopenic Purpura (TTP).

I was brought back to full health by Plasma Exchanges using Heamofiltration, and Steroids.

In August 1997 I again became unwell – noticing the pinprick rash – caught it early enough for Plasma Exchanges to be effective – again using Steroids to help it along.  Within 6 months I was back in full time work.

Once again in April 1999 I relapsed but thankfully noticed quickly enough to get good results from Plasmapheresis and Steroids, Once again I was back at work by the Autumn with no long term after effects other than a bad memory.

I thought Id seen the back of it and was just starting to relax a little when in late August 2003 and with over 4 years remission under my belt I relapsed again and as I write Im having Plasma exchanges together with  some steroids.

 

When I first became unwell back in 1995 I felt completely isolated by this disease.  No one seemed to know anything about it – although the Nurses and Doctors were fantastic and often copied paragraphs from medical texts for me, I desperately wanted to know about other people who had been where I was.  I made a plea in a UK woman’s magazine and was surprised by the response that I had – over 20 replies.  Some of the people who wrote were confusing TTP with ITP which is understandable but there were still a few letters from people who did know what I was talking about.

 

The support group TTPNetwork was born and for a couple of years I maintained it with quarterly newsletters and a sharing of experiences.  As time went by the Network became more busy and I found juggling relapses with work and life in general I had little time to give the Network the commitment it deserved.  The Internet was becoming more accessible to people either at home, work or at local libraries and cafes – so I made a difficult decision to run the TTPNetwork via the internet only. 

Thankfully I managed to secure the help of Dale a computer whiz and the new site and  message board started in September 2001. Since that time we have had a steady and regular stream of contributors.  To date, we have exceeded 100 members (and that’s just those who choose to add their details) they join us from all over the world and include people who have had TTP, family of those dealing with TTP, friends and nursing/medical staff.

 

The very nature of the disease has meant that we have suffered losses as a group which we have found it hard to deal with but supported each other. There have also been success stories, and most of all a vast amount of inspiration.

TTP appears to affect people differently and whilst some of us are left with little or no evidence of it after each episode, others are left with many reminders.

 

The aim of this site and the TTPNetwork is to provide a place where information can be found, Contributions can me made and experiences can be shared. 

We want you to feel welcome to simply observe or join in – whatever you decide, hopefully just finding us will avoid you feeling the same extreme isolation that drove me to set up this group in the first place.

 

We have (thanks to Jeannie) coined a phrase in the TTPNetwork…

 

So with her words I would like to wish you all …

High Platelets!

 

Jo

September 2003.