Jo’s Story

In 1995, aged twenty-four, Jo M. was diagnosed with a rare blood condition Thrombotic Thrombocytopenic Purpura or TTP.

Jo felt lonely and confused and wanted to speak to others who had been in a similar situation. She quickly found that as the condition was so rare, there were no support groups or opportunities to contact others. Even her consultant had only ever treated one patient with the condition and that was 10 years earlier.

In 1998, eighteen months after her original diagnosis Jo wrote to the UK magazine, Woman. From that article, she received over 15 letters. Most were from people with conditions similar but not identical to TTP but a few were from people who had been diagnosed with TTP.

The Network was established that year and over the following years Jo sent out quarterly newsletters by post to all those who corresponded with her. However it soon became apparent that there was not enough new information to put into regular newsletters and since the internet was becoming much more accessible with internet facilities in most libraries, Jo felt it best to set up a website.