Someone To Hold Your Hand

I think it’s fair to say that a lot of things you read online are either inaccurate or irrelevant.  When I was diagnosed with TTP in 2013 I was advised not to randomly search for information.

Much of the information can be out of date.  Much of it is from a professional point of view and includes phrases about mortality rates and shortened life spans.  Well patients don’t need that when they are under the effects of high dose steroids and suffering from PTDS.   We need positive stories, and I hope mine is just that.

That first treatment period, following diagnosis is so scary.  You need someone to hold your hand and tell you how well you’re doing.  

Of course, it’s hard for your family and friends too.  My husband says that being called into a side room and told the worst things was traumatic too.  And these things are not easy for others to just put aside.

So remember to look forward as well as up.  The TTP Network is the only place I have found other people diagnosed with TTP and have been able to read their stories.  And we are all survivors.  There are some positives.   Don’t get bogged down.   Find solutions, find ways to do things.  There are worse things in this world.

Since my diagnosis I have travelled abroad, I’ve finished a virtual walking challenge from Lands End to John O’Groats, I’ve worked, and now I’m eagerly awaiting my State Pension on my next birthday.  

TTP Treatments