ITP – Running in the Family

Pregnancy and ITP, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp

Many doctors will quickly dismiss any likelihood of passing ITP from mother to child during pregnancy.  That is because it is incredibly unlikely.  It is rare for an ITP mother to give birth to an ITP baby.  And yet, in many cases you have probably heard that you have a ‘genetic predisposition’ to the Autoimmune disorder.  Where do our genetics come from again?  Oh that’s right.  Our parents.  

Firstly, I want to let you know that my mother and I both see the same Haematologist; ITP, autoimmune haemolytic anemia, Hughes Syndrome, Lupus Antibodies, SLE and now Raynard’s Phenomenon.  But I have three other siblings.  So if I got ITP from my mum, then we would all have ITP right?

The other day I read the story of Beckie Mostello whom after battling ITP herself, found out her 10 year old daughter also had ITP.  This was after she herself had become healthy and believed that ITP was in her families past.  It is really just a fluke?  I can’t believe it.

Another young girl wrote to me a few months ago, explaining the story of her diagnosis and how her mother has been dealing with ITP in her life too.  At the time of writing to me, she was struggling with coincidence of it all.

NATURE vs NURTURE with ITP

At the moment, research papers such as the ‘Analysis of Families in the Multiple Autoimmune Disease Genetic Consortium Collection’ and ‘Emerging Patterns of Genetic Overlap across Autoimmune Disorders,‘ are looking for information about the hereditary nature of autoimmune disorders, but are still coming up short with definitive answers.  Neither study can differentiate the effects of nature vs nurture on the immune response of families.

After looking around online, I cannot help but think that Medical research is right on the cusp of finding the answer to this question.  The hereditary nature of autoimmune diseases is being examined as we speak.  It will be exciting to discover the answers, when they are finally published.  I am sure it will be soon.

My family is participating in a genetic research program in Australia.  Clinical trail doctors were interested to hear that my mother and I both suffer from different autoimmune disorders.  The trial is taking place now, and we are unsure of when the findings will be published.

Do you have multiple autoimmune diseases in your family?  Do you share ITP in the family?  So much of what we know about ITP is anecdotal evidence.  Please share your information below.

 

 

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

17 thoughts on “ITP – Running in the Family

  1. bhatton@internode.on.net'
    Bron says:

    I have had ITP for 17 years and also have immune neutropenia. My son is 6 and was born just fine. At aged 4 he developed what we hoped was acute ITP but alas he was diagnosed chronic because he had 4 episodes in 2 years. Whilst he has not had an’episode” for 12 months now his numbers go likes wings and round abouts. We had genetic testing and no link was shown. They think mine was triggered by an acute flu whilst living in the UK and his by a virus that was travelling around at the time. He was one of 10 children in 8 days that had been admitted to the same hospital with ITP. I believe the strange beast that it is comes in many forms, viral reactive, auto immune, idiopathic and so on.The heamotologist said whilst she felt there was no genetic link that if we delved a lot further she is sure we would find our family history we would have a much bigger immune picture. I am just not ready to let them do digging in his bone marrow to broaden that pictures just yet.

  2. Arielle.rojas211@gmail.com'
    Arielle says:

    Hi. I have had ITP for a little over two years now. At first it seemed like I was in it alone. However after doing some research I came to discover that not ITP but auto immune diseases itself runs in my family. Thankfully my mother on a whole is fine and AD free. However, my aunt has sarcoidosis and my has uncle multiple sclerosis. Both related to my mothers side of the family. Makes me wonder why would AD skip generations? Or is it imbedded in our genes and all it takes is a trigger to set it off? If so how can we identify these triggers and prevent other family members from potentially developing an AD?

  3. allisonsims79@yahoo.com'
    allison says:

    My oldest sister and I have familial thrombocytopenia. Our middle sister does not. My oldest sister has two girls, only one of which has it. I had two girls and both have it. My middle sister was told that since she didnt have it that her children wouldnt have it. Her daughter was diagnosed a year ago. My platlets average about 45 and my children are 30 to 35.

  4. Meg says:

    I knew it! I knew there had to be something to this family thing. Thanks for sharing your stories above, it is amazing how common this is…

  5. Taurus_woman@hotmail.com'
    Andrea says:

    I was just diagnosed with ITP 2 months ago now. I’m a Registered Nurse and my training saved my life (that and comparing hair legs one night shift)! Prior to being diagnosed I suffered through two pregnancy loses. Both all doctors basically said were unexplainable. Then after my second pregnancy loss I needed a D&C and suffered endometritis (infection of the inner lining of the uterus) after several courses of antibiotics and emotional ups and downs I was working a night shift and oddly enough comparing hair legs with my coworkers. I then noticed I had obvious petechiae. A few days prior to that I noticed a couple spots on my arms but had just done a big set of push ups so ruled it out to be nothing more than a small bruise. Then working my first night shift I ended up with two heavy bloody noses and the next night I knew something wasn’t right. As soon as I got off work in the morning I called my doctor. Oddly enough I was calling to follow up on a pelvic ultrasound I had a few weeks prior because I kept having persistent pelvic pain since the last pregnancy loss and the surgery (we were still trying to figure out why I had so much pain if it was still infection or something more serious). So after we reviewed the ultrasound which was normal I showed him the petechiae I had. He looked in my mouth and saw them in there and we decides some bloodwork was needed. Now as I mentioned I am an RN and have a lot of experience with ITP but only with secondary ITP from bone marrow insuffiencies from certain cancers. So my family and me were at my husbands family for dinner when I got a phone call from my doctor who said “Andrea I’m not sure what’s happening but I need you to go straight to the hospital and admit you because your platelets are 5. So go straight there and be careful not to bump yourself!” Well I knew all that because I have delt and treated many patients with ITP from cancers already. My mind went wild thinking I had cancer now amongst everything that was already going on. My doctor said not to worry though because nothing else looked suspicious in the bloodwork. So when I got to the hospital (the day I just finished my 4th 12 hour night shift) I was admitted right away and more bloodwork was done and then began seeing internists who I knew from working there. In 4 hours my platelets dropped again the now 4,000 from 5,000. I was scared. I knew critical low was 10,000 and anything lower could result in spontaneous bleeding. I was given high doses of steriods IV and then three doses of IVIG. Luckily I responded fast but felt like garbage! I had a reaction to the ivig that led me to feeling very sick. After three days in the hospital and nothing being delt with in regard to my pelvic pain I was discharged on a high starting tapering does of prednisone for 4 weeks. During that time my pelvic pain persisted so we then saw the obgyn that performed the D&C and he brushed me off bc he basically said he wasn’t going to touch me anything because of the new ITP. At this point I’m getting weekly blood work as my platelets have still been going up and down but I refuse treatment of steriods unless they get to around 50. Right now they are 149 but we have been told now to not try to have children until we see more specialists. We are exhausted and worried but every day hold our 5 year old so close because we may not have anymore children anymore.
    These stories be blogs have made me realize me and my family are not alone. We are a very active family and last year I ran three half marathons amongst many 10km races and places for them. Being diagnosed with ITP has without question been changed me. I want to train more but I worry the fatigue with catch up to me with shift work and family life and ITP and wanting to expand our family. I don’t sit well with not being in control of my life and maybe I haven’t grieved this well but I get angry that something so rare and random where docs seem to be so unsure of what it is happens to me!

    • Meg says:

      Andrea, Thank you so much for sharing your story with us. It is so incredible how many people are left feeling so alone when there are so many of us out there with ITP right now. Being diagnosed with ITP certainly changes your whole life. Wishing you so much love. M

  6. vicki-k@xtra.co.nz'
    Vicki says:

    Hi there,

    Firstly, can I say what a fabulous website and Facebook page you have. You certainly have put a lot of time and effort into it, well done.

    Five weeks ago we found out that our 4 year old son has ITP. We knew there was a family history but never in our wildest dreams did we think it would pop up again, especially to us. We didn’t really know very much about the disorder and now we are looking into it left, right, and centre, especially the family connection.

    It turns out that our wee man is the fifth known case since the early 1950’s, all in the same family blood line either in successive generations or skipping one generation – not to say that the in-between generations may not develop it in the future (lets hope not!).

    We are definitely hoping to look into the family connection a lot more in the near future and would love to participate or be involved in any kind of research out there so that we can all, as a community, find a link to this not-so-coincidental phenomenon. Ways and ideas of how to fundraise in New Zealand would also be something we’d be very interested in.

  7. calizac2002@yahoo.com'
    Carrie says:

    My daughter was diagnosed with ITP in 2012, it took 2 years of her platelet count bouncing up and down, to get her into normal range. She has remained in the normal range since the fall of 2014. Last fall 2015, my niece was diagnosed with ITP, she is seeing the same hematologist that my daughter saw. The clinic says there is no connection. I have a sibling that has suffered low platelet count for years (although never in the danger zone), but has never been diagnosed with ITP. I am very interested to see what the connection is for my family. My daughter has a dr appt tomorrow, in which I will be looking into the family connection.

  8. dvh715@yahoo.com'
    Christy says:

    My daughter had ITP when she was in 2nd grade. She is 26 now and has a 6-year-old daughter. I noticed the same kind of unusual looking bruises on my grand daughter yesterday. Should I be concerned? Is it hereditary?

  9. seguozideshu_198@163.com'
    Zephyrine says:

    My grandmother was diagnosed with ITP in her 50s, and my mother was also diagnosed in her late 40s. They didn’t do any genetic test as our condition was not allowed to. I also have two uncles who do not have any symptom untill now. But i still wonder if i would have the same during my 40s. Is that an autoimmune disorder that could be genetic or just a matter of hormone secretion problem? What should i do?

  10. bethahn@live.com'
    Nancy Ahn says:

    I know this article is older but I just found out that that my Cousin who is a year younger then me has ITP just like me. We were close when we were younger but have not spoken much since we have been adults. So even though we both have had it for awhile, we both just found out that the other has ITP.

    • Meg says:

      Oh wow! That is so interesting. I wonder if it runs in the family, there are definitely a lot of stories suggesting it does.

  11. tlamble99@optusnet.com.au'
    Beronia says:

    My daughter has had symptoms of ITP for about four years. During her pregnancy, she monitored her platelet count and at worst it was 87 and at best it was 120.
    Her three week old baby boy now has ITP and is being treated with gamma gobulin as we speak. His platelet count was 20 last night. After one dose, it went up to 38. He’s having another dose tonight. It’s such a tough way to begin parenthood, but they’re wonderful parents. He’s oblivious, eating, sleeping and pooping like normal. Taking the blood samples is the worst part.
    I don’t know why there are claims that it can’t be passed on in pregnancy. We were told there was a reasonable chance the baby would have it, at birth. And thus it came to pass….

    • Meg says:

      Hi Beronia, I’m sorry to hear about your grandson, but I think I understand why doctors are not quick to make statements about ITP being passed through pregnancy. Firstly a platelet count of 87 is not that abnormal for pregnancy. Many women, including myself, have platelet counts of 20 or less during pregnancy and go on to have perfectly healthy bubs with no abnormal platelet counts.

  12. n_atanacio1967@yahoo.com'
    Narissa says:

    My sister died from it 3 days ago. She was first diagnosed with ITP in May 2017 and had fever for a week on the last week of July. She checked in herself to the hospital and the next day she was in ICU due to her oxygen level being low. She contracted pneumonia and later lead to kidney failure and cardiac pulmonary arrest. She was only 58 years old and we are now worried that we may all have ITP too. My mom died of leukemia and some people said that Leukemia and ITP are related.

    • Meg says:

      Oh my goodness! I am so sorry to hear! This is terrible news, our thoughts are with you. Best to get yourself checked as soon as possible. Yes people with leukemia do sometimes have a low platelet count, but there are not mutually exclusive.

  13. steve@fivekings.co.uk'
    Steve says:

    I have 3 daughters. Two have them have diagnosed itp. The eldest had it severely and was treated by splenectomy. My middle daughter has it to a lesser degree but is monitored. Neither my wife nor I have it as far as we know.

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