Looking for exchange in respect of ITP

Posted by nabravo @nabravo, Mar 5 4:33am

Hello to All,
I'm from Germany and looking for help or sharing experiences with ITP.
My girlfriend is in hospital for 7 weeks now and all usual medicine to increase the platelets didn't result in any improvements. Amount of platelets still below 1000.
In addition, the figured out mastocytosis but should't have a direct correlation.
Does anyone have experiences with similar behaviour?

BTW: Sorry for my bad englisch

Many thanks in advance for any support

BR,
Oliver

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Becky, Volunteer Mentor | @becsbuddy | Mar 7 8:46pm

@nabravo Welcome to Mayo Clinic Connect! We’re very glad that you found us all the way from Germany!
It must be so frightening for both you and your girlfriend that she is sick and in the hospital for so long. Are you able to stay with her most of the time? Are her parents also there?
https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp
Here are some members that can tell you about their experiences with ITP: @vishu1009 @dustycat52 @genohappydays @jcope64 @et09
This url will take you to a discussion on ITP where you can get lots of information and ask questions. It was started some years ago, but continues today. I hope you find some answers and meet some members who will help your girlfriend get out of the hospital. Will you stay in touch with us and keep us informed about your girlfriend?
May I ask, how did you find Connect?

nabravo | @nabravo | Mar 8 3:26am

@becsbuddy

many thanks sharing all this information with me.
I already found similar case and asked for some information .
As this illness is very rare, when I'm right, Germany does have only about 700 incidents @82milion citizens, I simply was looking for a bigger country than Germany is 🙂 By googling I found Mayo Clinic Connect. Great platform btw.
For sure I will post any updates or findings.

-Oliver

slkanowitz | @slkanowitz | Mar 9 4:39pm

I have a girlfriend who lived in Germany two years who had ITP from Tylenol (acetaminophen) while there. I have reached out to her and perhaps she can help. I’m sorry she hasn’t responded yet to any treatments. Seven weeks is a long time to be hospitalized with a scary illness, especially when cause is uncertain and treatment ineffective thus far. Surely something will work and you might get information, help and support here. Best to you both!

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