Antiphospholipid Antibody Syndrome: A Patient's Journey
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- čas přidán 2. 09. 2010
- Rebecca, 39, suffered a massive stroke in her mid-30s that left her almost entirely incapacitated, although she recovered under the care of her doctors. The stroke was caused by a previously undiagnosed autoimmune disorder called antiphospholipid antibody syndrome (APS), which causes blood to clot more easily and can result in early miscarriages. Now that Rebecca is pregnant with her first child, her team of doctors must closely monitor her condition to ensure a safe delivery. To learn more about APS and other blood disorders, visit ASH's patient resources webpage hematology.org/Patients/.
This clip was excerpted from the documentary film "Blood Detectives." To learn more about the film, visit www.hematology.org/Publication... - Věda a technologie
My wife suffers from aps, it was missdiagnosed for 7 years, and it has almost killed her twice (venus vien thrombosis and a deep vien thrombosis).
We never knew she had aps till 3 years after our son was born. We never knew how lucky we were till we did more research into aps.
To all those people suffering, you are not alone.
Hello Bro, be brave and strong, my sis has aps and lost a child at 8 months recently, does ur wife have symptoms from day to day???
@@terminator969 she does. Its mostly managed due to the meds, but she gets bad days once in a while (we just tell our son its family day, watch movies and such while i run around doing the errands/cleaning).
I think the most terrifying thing for us is the fact that shes on warfrin (american insurance sucks), and in the current covid climate she has to get her cumadin levels checked monthly.
Speaking of, covid is even more fatal to aps victims due to the blood clots it can produce.
@@andrewwright7520 oh... Bro we didn't knew my sis has aps until she lost a child, then doc asked to get this test done and got positive for it, I'm from India Bro, she doesn't have much symptoms apart from light headaches
@@andrewwright7520 I'm tensed about it Bro, does the symptoms increase with age or it may or may not affect ??
@@terminator969 it may get worse with age. Expect fatuige as things progress, i know my wife gets tired way easier than she did pre diagnosis. The threat of bloodclots are very real. Do not chance it, if you suspect a clot, go to the er and get those clot busters asap.
Also due to clots, be aware of stroke symptoms. When my wife had her vbt, she stroked. She recovered thankfully, but that stuff is scary.
This is encouraging. Gives me hope! 😭😭💗
How encouraging hope to see my rainbow baby soon😍😍
I was just diagnosed with APS after a dvt. After finding this out, I was so scared about the miscarriages and pregnancy with this autoimmune disease
35yr old male here, had a PE in December '18 and my hematologist diagnosed me with APS. It's being recommended I stay on my blood thinner (Eliquis) for life.
Stay strong im 27 male and had a blot clot in my eye last year ( lost half my sight on the eye ) they have still not found out what caused it but I am being checked now for this APS. They done many blood tests and found those antibodies so I am also on blood thin meds right now.
As someone with APS and SLE it is scary to think of what could have happened. I had PEs on two occasions (once in my last pregnancy which I didn't know about and was lucky to survive)!
It is time awareness is heightened on these serious condition.
I am so sorry. Can I connect with you somewhere? Facebook? I have a few questions,🙏 God bless you
i had 2 PE's at 17 me and you are very lucky to be alive :) but im happy i found out before i had kids
I just studied about APS. Quite helpful vdo thank you guys
Very encouraging :-)
my mother had 3 major strokes in 2004 she pulled through and is now a grandmother to my 15 month old son and our next baby is due in july of this year. she is an amazing woman as are all those that survive this disease. and now they are saying it is hereditary. myself my brother and my son have been tested for the disease and we are waiting on the results
Hello Bro, can I know your results please
I am diagnosed with APS since 2018.
I have factor XIII deficiency,and also have a desease 'easy bruises & internal bleeding,my INR and PT rate is also very high,due to use anticoaglant, Rivaroxaban in the past for the led desease,I have no blood clot, please tell me that what I could do.
Will not a Plasmapheresis before delivery reduce the risk of a thrombotic event(Stroke) during a medication-free delivery for such a patient?
Though a percentage of patients with antiphospholipid autoimmune disorder have a tendency to form clots, it is error to define antiphospholipid autoimmune syndrome as a blood clotting disorder, as current research finds that percentage of patients with antiphospholipid autoimmune syndrome do not have the tendency to form clots and anticoagulants for such patients is contraindicated, if not dangerous.. In fact, APLAS has subsets. Some patients with APLAS have thrombocytopenia (a tendency to hemorrhage), some have both thrombophilia and thrombocytopenia, some have neither but have a history of fetal loss and premature births. Please See: "Nonthrombotic manifestations of the antiphospholipid syndrome: away from thrombosis?," Asherson, et al.
I’ve just been diagnosed with this after being tested by my fertility clinic to find out why I’ve had so many miscarriages
Hi can i have a wats app or fb # so we can talk i hv a few questions for u
Baby possible during s.l.e or brain surgery
Plz reply me
My father has been morvan sydron pseant plz confirm titmeant 🙏🙏 help me
I am 68yrs old and I found out I have this blood disease and I found out last September 2023
I'm 19 years old and have survived 2 PE's as well.. both undiagnosed as to what they were caused from. My hematologists were convinced it must have been APS, but those blood tests came back negative. More awareness needs to be made about these 'silent killers' however. Too many have been taken so suddenly.
wat is anticardiolipin Antibodies plz
Suzanne Lambregts have you been checked for polycythemia?
I’m a male and have it and it caused my heart attack due to a clot in the major artery when I was 18, I’m 19 and almost normal now!
Are you on meds now for it..or did it go away?
Mr. Disney I’m on Brilinta which is a strong blood thinner, baby aspirin, metropalol which is strong blood pressure meds, and Atrovastatin for Cholesterol. I take more medications as well including seizure meds but the other meds I listed is from the heart attack. I’m 20 now and still filling normal other than seizure problems recently
@@pvt_snowballss hello Bro, I'm sorry to hear, hope u recover soon, can u please tell me what symptoms u had before knowing that u have aps???
@@terminator969 main symptoms I had was just very high blood pressure but other than that I had no other symptoms until after the heart attack
@@pvt_snowballss oh after attack u got to know that u have aps correct?? Did ur reports get positive Bro?
I had two miscarriages,it was 7 years ago. I was feeling scared to have a baby again, but then I tried to find what had happened to the two baby and I found out that I have Aps.Anti Phospholipid syndrome. It made me feel bad about the past, it made me scared but now I have a chance to have a baby again by monitoring and medicine.😢
Hello dear I had 7 misscarriage due to APLA positive. I'm so worried about this. I have no baby plz suggest me dear what can I do for a successful pregency
Lovepreet Kaur you would need a good obstetrician and hematologist to monitor your condition. You would heparin injections and aspirin throughout your pregnancy.
@@purpledaz thx dear.. Thank you very much
I also had 2 miscarriages, the 1st one is on December 2018 and the recent one is last month July 2020. And yes I'm a little scared right now to have another baby. My OB said maybe I had an APS. Is there any chance I can have another baby??
@@jhoan2107 yes dear.. If you are suffering from apa you take heparin injection and meet best doctors
And after a very long and unfortunate history, just think…Deanna Sherman is or will be a TEENAGER very soon.
OH MY❣️🥰❣️
Congratulations❤️🎉
What is the anti phosholipid antibody capsules plz give me informed
Hi there! You can use our "Find a Hematologist" tool to help you find a hematologist near you to help answer your questions: www.hematology.org/Patients/FAH.aspx. In addition, general information is also available on our website, which you may find helpful. We list a number of other organizations providing patient information on blood disorders: www.hematology.org/Patients/Groups.aspx
I have it and as long as you take an 81mg aspirin everyday you will be fine. Keep in mind, if you get surgery make sure to tell your doctor so that they remove the aspirin for 10days.
American Society of Hematology I need help
I’m a 18 y/o male who got diagnosed a month ago when I had a heart attack from a blood clot formed due to APS
GravityShock778 so glad you are ok - gosh 18 years old. That is so sobering!!!
Wow that's bad, any permanent damage?
Rob G for the heart no, every time I do a stress test they always tell me it looks normal other than the stint in it. I’m 20 y/o now and currently just having seizure problems instead of heart problems
I have same problem and lost three babies.. Is there any treatment of this????
Yes! I have had three miscarriages as well. Am pregnant now, hopefully baby will survive. I take an injection daily, and an aspirin everyday. Find a specialist gyno who specializes in high risk pregnancy!
I m also suffering in this problem and 4time early pregnancy
Your doctor should give you blood thinner injections that’s what I took during my pregnancy and that’s what everyone with aps is suppose to be taking while pregnant or trying to become , if your dr hasn’t put you on anything I think it’s time for a new one seriously, you can get pregnant and keep it stay positive I promise get on blood thinners it will save the baby
2024,
Diana must be 13 yo now.
i have this and sle internal lupus
How are you now even my husband is suffering from SLE since one year what are the future complications
I have the disorder and had a premature birth by c-section...it almost killed me because I was undiagnosed. I needed 7 blood transfusions (because when they cut me open I was bleeding to death) and became anemic for 2 yrs. after my daughter's birth. My daughter was also anemic. I also went into HELLP Syndrome prior to the birth.....I shouldn't be here but I'm fine !!!!!!!
How are you now did the syndrome go away or still you are suffering what type of health care you are taking food diet etc
@@pavanipresents5484 No the syndrome does not go away but, it's not as severe as it was when I was pregnant. I do get tested periodically and that testing proved that I still have it.
@@artgirl9005my wife's just diagnosed for APS, and her lupus anticoagulant is positive. Please tell me, how u r feeling now, and what episode of health issues you had after pregnancy till now? Please respond. Thank you 🙏
@@an-icelander2560 Hi.This all happened to me almost 32 yrs. ago. When I have blood work done the titers in my blood show that I am ANA' positive, but do not have Lupus. I do however suffer from thyroid issues. I have no idea if this is related somehow. I've been fine and I'm lucky. Some people do suffer permanently after the birth of their child from Lupus or worse. I only had one child as this can occur over and over and could kill you. I should have been treated for this prior to my daughter's birth but it went undiagnosed. The medical practice I went to should have cought this but were negligent in their care.
I had two strokes at 16
Wow, was there any permanent damage?
oh and no more children for me :) too dangerous :(
The husband looks like Homer Simpson lol
The doctors annoys me.
Can these patients take covid vaccine
I did
Yes, in fact it’s detrimental.
Tetanus shots cause this issue in a lot of ppl.
I have aps. Diagnosed after 2 miscarriages i dont think i can try again.
You may consult a doctor if you still want to bear a child. I know your OB will give you aspirin as well as heparin... who knows this time it will succeed.
@@emmanuellego6762 thanks but im also 40 which would prob bring more complications. 😯
@@emmanuellego6762 you poor thing. I honesty dont think im strong enough for pregnancy or coping if something went wrong. Wish you all the best and a healthy pregnancy and bouncing baby. Xx
Yeah, that's the sad thing about having APAS. It's really difficult during coping time. I reli feel you. Crossed fingers that everything is gonna be alright. As of this moment I am having a hard time keeping my self healthy esp if I have a lil spotting. God help me to survive in this challenge.
@@delores6458 thank you for the positive conversation. Would be happy to hear you having bb bump soon. GOD bless you.