How rare is familial ITP?

I have had this condition since I can remember, and can't find much about it on the internet besides that it's rare and many websites say it doesn't exist or it's unclear whether it exists or not. There were no stats. Anyone have an answer?

Here are some articles about it:

www.pdsa.org/about-itp/and-families.html

www.pdsa.org/resources/other-platelet-disorders.html?layout=item

Thanks!

Hi,
I wanted to let you know that my husband and son have low platelets--though they have never showed the symtoms of ITP. My husband's platelets were as low as l03,000 this year and my son's were 130,000 or 140,000. Mine have gone as low as 1,000. I am going to email the professor at the university to see what she has to say. Since my husband is not a blood relative, I'm thinking he got the low platelets because of his welding career. I think it might have done some kind of damage. I know his platelets got up a little higher in 2009, but after doing a lot of welding that year, they dropped to the lowest they have ever been. When I look back at my husband's blood tests, they were always around 130,000 back in 1998. That's as far back as I can find it his blood tests.

Do you have something similar going on in your family? I'm not sure on my son. My Dad and brother both died from a blood disorder--but not ITP.

Dee Dee

Also, I forgot to add that my husband was also a fire fighter in his younger years; and, no one else in his family has low platelets (Mother is 77, Father is 83).

Dee Dee

First of all, it's very mild. I have it, my sister has it, my dad and two of his siblings have it, a few of my cousins have it, and my grandfather had it. It doesn't affect my everyday life much.

My husband and son also would be considered mild. Actually, my son has never been diagnosed as having ITP--it's just his platelets always stay about 150,000 and sometimes go below 150,000 (like 130-140,000) when he is sick. My husband has never had any symtoms either--but I do think the welding caused his low platelets since it does not run in his family. Do you have any family member who's platelets went really low as they got older (like in their 50's, 60's)? I'm 62 and never had ITP until 4 years ago. Now, my platelets finally went back into 300,000--but it did take 4 treatments of Decadron.

Dee Dee

No, it has always just been really mild. In the family we just have slightly lower platelets.
I think destroying platelets might speed up the metabolism or something, because Dad's three sibling who didn't have ITP were all overweight, and the 3 who did were normal or skinny. Just an interesting observation.

There are overweight people with ITP.

I believe you. It was just a theory relating to what I have observed.

I was skinny till I started on pred, then it made me gain weight and I have never been able to take it all back off, but I am on a diet and have a personal trainer, so I am hoping to this time

unfortunatly I'm one of them! :blink:

I just found out more about the subject, and apparently I have some sort of familial cITP. I'm normally in the 100-160K range, and yes I have been tested.
As for the rarity, all I know is that my family has this particular variety of cITP. I don't even know if anyone else has this specific gene.

How were you tested to find out that you have a familial cITP? I am still going to email the doctor in San Diego so she can checkout my family to see if they have something similiar. At least you are doing fine. I'm not sure for my husband, though, since there is no relation on that count.

Pretty rare from what I understand. My father had it. He died from a massive brain bleed back in 77.For months before they tried everything to raise his platelets, and stop the nose bleeds. But when I mention this family connection to every oncologist I have seen, they always smile and say,"Just a coincidence, nothing more."...

Actually, my sister and I have both had ITP. I consider it a coincidence also.

My twin sister has a totally different platelet disorder.....Coincidence.

The tenancy to inherit autoimmune disorders is always there if the predisposition is in the family. The fact that two family members end up with the same one usually is, in my opinion, coincidence (unless it is a known inherited disorder). I have one sister with ITP, one with Discoid Lupus, I have Lupus and ITP, my daughter has Graves Disease and asthma...and so it goes. Luck of the draw....

This is definitely more than just a coincidence, and my family was studied earlier, I think.
My grandpa had it, two aunts and one uncle have it, my father has it, I have it, my sister has it and two of my cousins have it. It's also a dominant gene, btw.

If you have several family members, yes, it definitely could be familial. Which type do you have?

I think they're still trying to figure that one out. I will be tested soon, and they will analyze my genes or something like that. The etiology is unknown. The platelets themselves are normal, there are just less of them.