My daughter who is 34 was just diagnosed with this. When she was 3 she had ITP. Is there a connection?
Hello and welcome to our friendly forum.
When you say that your daughter, "...was just diagnosed with this", do you mean APS/Hughes Syndrome?
We are not medical professionals on here, so we cannot provide diagnosis or treatment advice, I'm afraid.
However, I have not heard of ITP, what is it?
It would assist us and others on here to help you if you could let us know where you are located.
Is your daughter being treated by a consultant who is a specialist in APS/Hughes Syndrome?
Does your daughter have Huges Syndrome/APS? Do you perhaps also have Hughes Syndrome as it can run i the family?
You do not say so much in your question where you live and symptoms etc. ITP is not something very common with our very thick blood. We are no Doctors here either, only have APS and try to help.
Best wishes from Kerstin in Stockholm
Hi i have had ITP. for 25 years and then developed hughes. Aparrently the is a strong connection .
When I looked it up last evening I could see some relationship but not very common with autoimmun illnesses. I did not know what ITP was but had heard of it. That is why I had to look at the internet. I think I understood that it meant also too thin blood. (?)
As you say apparently it has a strong connection. Have I understood it right that it has to do with thin blood? We have too thick blood.(?)
Hi kerstin ,yes it's a platlet deficiency which causes bruising and nose bleeds etc. I had it for a long time .my haematologist would neverbelieve that it is an autoimnune disorder but it definately is.To complicate matters it can be one of the first signs of APS. GLAD PASK to you kerstin.(i don't think i can do the little symbol that goes over the A ) Elfie
Hi...No I do not have Hughes. As far as I know it is not in our families. Very interesting Elie that you also had ITP and now have Hughes. I wonder if the immune system does too good a job and makes your body go in the opposite direction.
Thank you for replying regarding whether you have Hughes Syndrome or not.
I do not know if there is a forum for ITP but this forum is for patients with APS/Hughes Syndrome, not a general medical syndrome.
I am 48.
When I was 18 mos old I developed ITP. ( back then it was considered "idiopathic", not "immune." It was a very severe case. Key hole surgury was not yet invented, and the hematologist told my parents he thought I was too ill to survive a splenectomy, however if I did not improve he would have no choice. Heavy steroids were prescribed, and thankfully I " turned the corner!"
I went on to have a rather uneventful and healthy childhood !
I'm my 20's things changes, APS symptons kicked in, my health problems progressed on a course that intimately led to the diagnosis of "strong case of APS" 5 months ago.
So, back to your question: the relation ship between APS and ITP?
1. What does the Sapporo Criteria say about it?
Its on the fringe of items to consider. Dr Hughes lists it in the work up of the patients history, and says," it's important."
2. What does my hematologist in San Antonio Texas say about my case of ITP and APS?
Very likely I was in an APS flare and microclotting at 18 mos. the massive steroid regiment could have well suppressed the antibodies and mitigated the ITP acute illness. The fact that the acute phase was about 6 weeks supports his theory as this is about the time it would take the steroids to suppress the antibodies.
This is all retrospective- my parents have passed away some years ago. ( my mother from a clotting disorder ... imagine that.) so I'm relying on my sisters memories of that time. They were 20 at the time.)
*auticorrect: ULTIMATELY led to the diagnosis of a sting case of APS
( sorry about that! Especially to Kersten! Poor Swede... dealing with autocorrect!)
I read this and then suddenly at the bottom I read about that you are sorry for me.......why ? Poor Swede ....... I got almost a little chock. Please try to explain what you mean?
What is "autocorrect and also ULTIMATELY?"
Kerstin in Stockholm
Hi Kelly I hope your getting to feel better now. Just a n FYI. If you neeed to fix something in your post. You can click on the arrow to the right of the "like button" and "edit" will pop up. Click on that and Then you can go back and change the area you want to correct. It makes it easier. When finished , click on the green " edit response at the bottom and things will change. How are you liking the lovenox?
No, it's difficult to make sense of English when it's glitching and not making sense because of auto correct! Must be difficult even though you English is basically perfect- it's even difficult for us in our own native language😘
Oh- auto correct is when you type something- but misspell on iPhone- Siri decides to correct spelling. But she corrects to a different word that makes no sense in the context of the sentence.
My vision is SO bad. I think the heparin is too low a dose. Waiting for results. My eyes are shaking- can't keep vision stable. It's extremely difficult to type. So Siri "auto corrects" in very creative ways!
And.... ultimately means " finally. "
So in context-
I was trying to type :
Ultimately led to a diagnosis, which also means , "finally lead to a diagnosis ( of APS.)
But SIRI auto corrected the word ultimately to "intimately." I must have misspelled it the first time so Siri took her best guess. The word "intimately" is a vey wrong word in this context, do you understand, Kersten? It can have a very sexual undertone. It was a very unfortunate autocorrect. Got it?
I never use "Siri" . Understands "Ultimately" but wondered why you wrote it in capital letters. No as a matter of fact I do not understand what it was all about. I know what "intimately" means but I can not see you used it so do not understand what it could have to do with me. Does not matter!
I am so sorry to hear about your bad vision. You want to help so many here and also do. Was it better with Warfarin?
Happy Easter! We eat a lot of eggs for Easter and today is the day of the witches. It has been a habit since the middle of the 1600th century - can you believe it!
Hey Kersten 👋Curious what does "day of the witches mean" never heard of that here in us. Should I be wishing you happy day of the witches?
Never mind- it only had to do with you because I knew you were "following the thread" ( reading along.) I just didn't want Siri to confuse you. As it turns it- I was the one who did! Sorry. Moving on...
Day of the witches! In Finland it was first day of summer- about June 21st. In midevil times because the sun did not set- the witches could see to stay out all night causing terrible problems for the poor people of the villages- so big fires had to be burned all along the shores of the lakes throughout the night to keep them away! Juuhaanus it is called. Mid summer night celebration. Pretty much just an excuse for every Finn to get totally "over enthusiastic " about drinking Finnish Vodka.
I'm thinking the Swedish Day of the witches is far more wholesome!
Thanks Kelly. I guess then Kerstin... be careful out there😉
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