What to Say

My best friend was diagnosed with ITP about a year ago. For a while, IVIG treatments were working for her. But in the last month or so, nothing seems to be working and her platelets keep dropping. She is covered in bruises and has blisters on her mouth. On top of all of this, she has a brand new baby to take care of.

What she is going through breaks my heart. So, my question is: What are some things your friends and family say or do to make it a little easier?

You're a good friend for asking. Do you know what other treatments she has tried? I'm asking because there are doctors who are not familiar with all of the treatments.

I honestly don't know what would have made things easier for me. I had a tendency to pretend that it wasn't happening and didn't really like to discuss it. I actually had more problems with the treatments than the ITP, so I guess it helped when friends and family ignored me when I had side effects (Prednisone mood swings and Pred Head). Hopefully others will chime in with better advice.

kc2017 wrote: What she is going through breaks my heart. So, my question is: What are some things your friends and family say or do to make it a little easier?

Hello KC
I am a fairly new ITP Goer myself. I was diagnosed on October 5 of this year. There really is nothing to be said to alleviate the fears, frustrations, confusion, anger, or any other feeling. The only thing you can do, in my opinion, is treat her as close to normal as possible and help her in anyway you think you can. Continue to ask her what she needs. Ask her to help. Be there. Support comes in many shapes and sizes and is literally person dependent.
The biggest thing for me was help for my wife. We have twin 5 year olds who just started kindergarten, a very rambunctious 3 year old boy, and a 5 month old little girl. Everyone who offered me help was directed to her.

The key is to try to find the treatment that helps her best. Ive been at this a month and have had: platelet infusions, Prednisone, Methylprednisolon, Dexamethasone, IVIG, and Nplate. From all my research, all the discussions on here, and all that ive been told from the many, many doctors that have seen me is there is no one fix-all for anyone.
I would definitely pass along these articles just for some research as to what she might want to try next:
www.bloodjournal.org/content/115/2/168
www.bloodjournal.org/content/129/21/2829

And as Sandi mentioned, most doctors do not have alot of experience with ITP. Every doctor, before I chose the one I am currently seeing, wanted to go straight to splenectomy when all the modern research says that is at least 6 months to a year down the road.
The biggest key to my able to keep my sanity through all of this is researching and knowing what I am up against, reading all of the many post on here, and educating myself on anything and everything about ITP.

I hope I helped.
Troy
Heal me, O LORD, and I shall be healed; save me, and I shall be saved: for thou art my praise.

KC, it is pretty emotionally releasing/cathartic for one to tell one's story about how they were diagnosed with ITP, to those with ITP. If you haven't asked before, maybe ask about that. This forum is full of those stories. Maybe tell her about this forum.

I think just being there for your friend, listening to her, not judging [as in "you don't look sick"], letting her know you care and just being your normal self meaning keep up the normal friendship you two had before her diagnosis. Just be you And let her know about this group, we'd love to have her come and check us out and we ALL love to share our story [almost to a fault ]. You are a good friend, she is lucky to have you!