How many members have a family member or child with APS?

I'm worried about my daughters especially the youngest she is 22 and has, problems with always feeling tired. dizzy spells as well as bad headaches that can last for days! But she also is a bit overweight and has allergies and asthma. Her headaches are becoming a great concern to me. I'm had both tested in 2010 neither were positive but I know that can change. Should I have her get retested? I don't know how comin it is for APS patient's adult children to also have APS. Am I being overly concerned? What do you guys think! Thank you for any information you share with me in this type of situation.

21 Replies

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  • Hi , I have APS and lupus my daughter is weak positive for it and my mother had it and my sister has lupus

  • Hi again,

    One month ago you wrote that you were worried about your daughters. You wrote that your youngest daughter got home from work because you were so bad and had called her.

    You also said that you understood that they were worried for you and that was a problem. I understand you as I have also two daughters. They know that I have good Doctors and that I take good care of myself .

    Therefor it is even more important that you find a Specialist for yourself that even your daugher could see for autoimmun illnesses (you know they go hand in hand at least 3 of them).

    A member here suggested you should call an ambulance when you got TIAs and we suggested you should find a Specialist who knows the autoimmun illnesses and who will cooperate and ev try LMW Heparin. Also ask someone to video when you had to crawl on the floor.

    Do you have a relative or a friend who could help you to find a Specialist.

    About your daughter; What does she think herself? Does she want to be retested? I think you should ask her if she would consider to try Baby-Aspirin for her headaches etc and see if that helps.

    Best wishes from Kerstin

  • As to your question; we now know that HS/APS run in families.

    Even if not all have HS some could have Lupus or Sjögrens or Thyroidea and therfore it is important to have a Doctor specialized in autoimmun illnesses and who knows they often go hand in hand.

    I have a daughter who has Diabetes type 1. My daughters are well aware of the different symptomsof HS/APS and as they are grown-up they know when they should be tested again. They were tested when I got my HS and then negative.

    Kerstin

  • Actually, what I meant to say is , she came home from work because she could not reach me by phone and that was due to me talking to my boss and a couple clients. I keep trying to work but it's not going very well, I do less and less because I get worse and worse. Anyway I was talk to boss and a client was trying to call me I didn't realize my daughter was tryn to call me as well. As soon as I realized it I told my boss I call him back that my dr was calling and I needed to answer that. She was halfway home when I reached her, she panicked when I didn't answer as I have been found unconscious in the past, prior to being diagnosed. My concern then was my daughters having to constantly worry about me I feel they are not living their lives because they want to be there if I need someone. They do help me a lot. But I need to know that they can live on their own and be happy and independent, but I think they are afraid to move out because of me!

    I am pretty sure I have sjogrens but since I tested negative the dr said I can't have it though I have read many people test negative but have it. I have a sister with Lupus & recently diagnosed sjogrens and a brother with a undiagnosed condition, unfortunately he doesn't talk to me so I cant help him get the care he needs. I am very thankful to u for all of your time and suggestions. I am planning on asking my PCP about LMWH if I my TIA's come back.

  • I do not know what a PCP is (GP?)

    I suggest you do not wait for a new TIA or stroke!

    I know it is very difficult in the US but you need help to get in contact with the Doctor who understands autoimmun illnesses (probably a Rheumatologist or a Hematologist) . Your PCP perhaps does not want to give you LMW Heparin if he does not understand your situation and also the trouble your daughters have as they are very worried for your life.

    Hope your daughter will try Baby-Aspirin and see if that helps .Wish she could help you to find some sort of solution even for her self.

    I wish I could help you!

    Kerstin

  • It doesn't run in my family, in fact the only other person I know with it I met at rhumatology.

  • It varies from family to family, it is not a given fact that everybody's children will have it, but some families do seem to have some sort of close pattern of inheritance. In mine, my two sisters and my brother, also one of my child mildly so, plus a thyroid problem, another with both Hughes and Lupus, and another with just Hughes, and of course myself. I would keep an eye and test again when convenient to you both. MaryF

  • I think it would be a good idea to get her to be tested. It may be that there is something else wrong so a doctors appointment wouldn't hurt anyway. No other members of my family currently have it but we are all pretty sure that my grandmother had it for various reasons.

    Hope for her sake it isn't but better safe than sorry x

  • I want to thank all of you for your help. Plz forgive me if I ask the same question more than once I have had so many TIA's that my memory is very bad and very little shorter memories. I can recall conversations people had around me when I was 3 but I can't remember what I said a minute ago. Also, I am planning on going to the ER with my next Tia but thankfully I have not had one in at least two weeks maybe 3. I try to note them all in my phone so I don't forget I had it. I do miss documenting some but I do prett good making note of them. I have my INR in a good place for a while so I been a little better. Still exhausted and can't concentrate but no TIA's. 🙂

  • I was told that HS/APS was not genetic. I have 3 adult kids (24-27) and was happy to tell them it was not. Now I am reading this post+responses so now I am starting to wonder. Okay I am pretty new with APS and trying to learn as much as I can. My kids are basically healthy. My middle child is bi-polar and has epilepsy and she definitely doesn't need anything else. My niece does have thyroid issues and she did ask me if APS is something that could be within our genetics.

    So much to learn about this syndrome.

    Heidi

  • No one else in my immediate family has it either, just thought I'd try to help! Good luck!

  • My father, two of his sisters and his mother. Mother and one sister both died of strokes, the other sister has repeated dvts and phlebitis but is not on ANY medication, not sure why.

    My fathers legs and feet were black from the knees down. He was on Warfarin for 6 months for a PE and DVT and said he felt the best he had in years. He asked to continue it but was refused. Another DVT later he was put on Rivaroxaban but had to stop two years later when he had advanced bowel cancer.

    My father was a patient of one of the failing hospitals in Lincolnshire. My aunt is in the west country. Neither had specialist APS consultants.

  • I am primary APS, my mother had it, and my 15 year old son just tested positive. Yes, best to have your children checked.

  • Both my daughter and I have it and my father and many of his siblings also

  • I am primary APS. My grandmother and grandfather had it (cousins), my mothers brother and ev even my mother.

    My grown-up girls wanted to be tested when I got HS/APS. They were negative. I got it in my middle-age.

    Kerstin

  • Hi,

    I have APS, my late father had APS, my daughter had APS when she was pregnant but when she gave birth to my grandson it went, (I have never heard of this before). Also my mother has lupus.

  • Hi Teanna,

    HS/APS once diagnosed will never go away. The antibodies may disappear for a period but the anticoagulation must not be taken away for your daughter.

    Hope you both have A Doctor who is knowledgable of autoimmun illnesses like Lupus and HS/APS. Some autoimmun illnesses like HS, Lupus, Sjögrens, Thyroidea may go hand in hand and therefor it is important the the Doctor knows how to distinguish between the different symptoms to give a correct diagnose and the proper treatment.

    Best wishes from Kerstin in Stockholm

  • Hi

    Thank you for your advice and knowledge. I thought once you have APS you have it for life.

    She lives in Bedford (quite far from me), so Bedford hospital has not got a persific clinic which deals with APS, but when she was pregnant, she had to have Fragmin daily. She also has arthritis and fibermeragia?? In both hands, some days she is crippled with it. She no longer takes any blood thinner. Should she get a second opinion?

    Again thank you very much

    Regards

    Tina

  • I have forgotten where you live (?) and how easy or difficult it is to see a Doctor who knows Autoimmun illlnesses (often a Rheumatologist) as I am sure you both need and also do it as soon as possible. That can depend on the country and if you live far away from the big cities.

    I wonder if you mean Fibromyalgia? That can sometimes be mixed up with one of the autoimmun illnesses that go hand in hand with HS/APS, Sjögrens Syndrome and also Thyroidea-issues. Arhritis ia a rheumatologic illness.

    I really hope you will together try to find a good Doctor for your need. Please tell us how it goes for you!

    Kerstin

  • Hi,

    Sorry I had replied earlier but I've been unwell.

    I did tell my daughter that she needs to be tested again. I actually made a mistake, my daughter was diagnosed with APS a couple of years before she had her first child and then she had her 2nd child, and that's when she was told she no longer had APS, and she was on fragmin throughout her pregnancies, so she had APS about 4/5 yrs. Not long after her 2nd child, she was told she no longer had APS.

    I have told her to be retested as is not well at all.

    Kind regards

    Tina

  • As others have mentioned, auto-immune diseases are common in fmaily members of APS patients. My sister has Crohn's. My father and first cousin have MS. My aunt has something but I can't remember the name for it. My grandmother's sister had Lupus and i'm pretty sure that if APS had been identified when my grandmother was younger, she'd be diagnosed with it. She had a history of miscarriages and strokes.

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