I have Antiphospholipid antibody syndrome...

[musteyhey]

VERY GOOD VIDEO I HAVE THIS SAME THING AND IM 43 STAY STRONG

[Ihavelupus2]

I hope u email back cuz we share the same diease ,. My drs wont give me meds

[Ihavelupus2]

i also have the same lupus u have its painful they told me if I get preganant I can died im not n remision yet my lupus is active and all I can take the dr say is blood thinets im like wat I be in so much pain

[jeanams23]

I am 27 and I have primary APS I found out when I was 23 weeks pregnant my son is now 8 1/2 months old. I am currently taking one baby aspirin a day. I had no idea you could be so young and have all of these side effects like stroke etc. Thank God I have not had any problem from it. Only thing I had was preeclampsia during my pregnancies.

[chandillylace]

Ashley, a friend of mine just posted this video you did on Facebook. You are an amazing young lady. I just wanted to thank you for sharing so much with us all, and reminding us to stay strong, and tell you I think you're awesome.

[MakeupbyAshley]

@chandillylace Thank you very much, and tell your friend to stay strong[:

[rainbowbrite24]

Very good video. I was diagnosed with Lupus almost a year ago now and I also have this along with it. You can have this without having Lupus though. Lots of people have it just on it's own but it's more commonly seen in those with auto immune diseases such as Lupus. So it's actually not a form of lupus it's a totally separate thing but with Lupus you can often have an array of other diseases along with it, this being one of them.

[rainbowbrite24]

I see this video is almost 2 years old now...how are you doing? Your video concerned me because all the symptoms you were describing were symptoms of Lupus. And I was surprised the doctors said you may develop Lupus and not that you have Lupus. All your symptoms...rash, nausea, joint pain, headaches...are all Lupus symptoms. You probably have Lupus and because of that developed the APS. If they still have not said you have Lupus I highly recommend you get a second opinion.

[MakeupbyAshley]

@rainbowbrite24 Thanks for the comment. My doctors test me for lupus every other month. I still dont have it. I also got a new line of doctors. Children's hospital wasn't doing anything to help me and they also diagnosed me wrong so i dont have Autoimmune Hemolytic Anemia. I just found that out 3 months ago. My new doctors are helping me very much, and Im very happy to have them. thanks again for looking out for me[:

[MakeupbyAshley]

@rainbowbrite24 Well all my doctors over the last 7 almost 8 years have told me that ASP is a form of lupus, and Ive seen about 4 different doctors, and they all told me that. My new line of doctors test me for all different ammune diseases ever other month including lupus and i dont have it. thanks for the comment.

[itzmyshow]

My brother has this last month at 2am he threw up blood and fel In the bathroom; he takes aristra (idk how to speel I'm only 12) u inject it through the stomach and he's been great well I mean a few downers like he has colitis (colon itus?) so it's ok ; I thought this diesese you were born from and it came randomly; I hate it there needs to be a cure I'm sick of it

[bubbiz99]

I am 42 and was diagnosed with this at 32. I am so sorry to hear u had this at such a young age. Your video is well done. I know how bad pain can be every day. No one knows unless they have a lot of pain. Then some medical professionals treat u like u just want drugs, huh? keep up the videos maybe we can help ppl to understand pain and how to treat it. Good job!!

[MakeupbyAshley]

@bubbiz99 thank you so much for the comment. i really want to make a new updated video on APS. some time this year hopefully[: i started going to lupus support groups, and they really help. thanks again.

[deadklown77]

I had my first blood clot in 1983, and had 6 since then, but , I have been on warafrin for 27 yrs. and Plaquienal, my INR. is kept at 2.5 to 3.0. I have all the symptoms, but it took many years for them to diagnose it as APS. I am 49, and male, I just want all who have it not to be afraid, my life is awesome, I don't surf anymore or do any martial arts anymore, but I lift weights and I look to healthy, but I have this dark passenger. As long as you are aware of it,you'll do well. Jimmy

[terryrodcrz]

really makes me want to go take my low dose asprin which was prescribed to me and i never take. thanks for your story.

[cmlaz21]

GodBless you Ashley. You inspired me by this video. Thank you.

[dancediva009]

I have SLE and APS. *sigh*

3 miscarriages in 3 years sucks!!! :(

[trshtwns01]

I am so glad that you were able to share your story. I also have APS, but I did want to clarify a few things in your video. APS is not a form of lupus. Many lupus patients have secondary APS, but you can also have primary APS (APS without having lupus). Also, the increased bruising is a side effect of the blood thinners you have to take, not from the APS.

Stay strong and keep spreading awareness!

[selavy59]

hey, I have that aps thingy. Don't have any symptoms though.Don't take any meds either. Sorry to hear u have probs with it.

[JodiBrighton]

Thank you for sharing ur story, you are a brave and beautiful girl! I am learning about this topic for my chiropractic degree and real life stories like urs are soooo musch more educational, it's real. i had a stroke last year aged 26 so can realate on lots on levels. God bless x

[angpanj24]

Hello, I also have antiphospholipid syndrom, but none of the docs around here act like they know the right course of treatment for me, i am nervous cause I alsways have chest pain, and super bad migrains, so bad for like days, and my body hurts all the time, really bad lately, I cry and my fam looks at me like I am crazy and making stuff up. What do you recomend i do.. What meds are you on for your APLS

[chiack82]

I have SLE and have another 6 days to wait to find out if I have APS. My sister was Diagnosed several years ago, has a pretty rough track history, similar to yours. Thanks for sharing your story.

I wish you all the best.

[salesmanwho]

Thank you for sharing your story with us

[beccab00834]

Im 12 and Me and my dad have it to i thought we were the only ones who had it but im glad other people have it to i got it when i was 8 because i had fluid in my knee. good luck with it and i hope we can both live as long as a normal person can. You have to take alot of medicines tho! i have to take one pill a day and i forget alot but my dad has to take a shot everyday. Also do u have alot of bloody noses because ive had to many to count. so good luck! :D

[roperneal]

I want to save you

[YumiEndoh]

My name is Jess I am 20 years old and I also have Aps I have had it for 4 years now this last year I was in the hospial for Catasrophic Aps so I ended up in the hospital for 4 month most of it spent in the ICU I was also put on prednisone I had 2 strokes and my kidneys failed I had to get the plasma treatments as well they have now switched me to cortef instead so I really understand what your going through except that you are much younger Continue to be strong

[babyblueangel1980]

Wow. I had a stroke last year. I was 28. This is also when we found out I have APS with the lupus anticouagulant. I pray for you. And you are not alone!!!

[littlechivita]

powerful story! this is such a strange comment but during this video I was thinking about what a good mom you'll be someday. haha i know its weird but you're calm and determined and compassionate with that little girl

[vanasayshello]

oh i love you ashley

-xoxox vana

[pangie152]

I've been watching your videos for awhile and I never knew this about you...thank you for sharing this with us. You have such a big heart and I'm so glad you're such a good, strong person. You really are an inspiration for other people going through the same thing :)

[lipglossjunkee]

wow i look up to u for being so strong through all of this.

[6526587]

do you have any sypmtoms from you stroke, or did the things u were talking about like the numbness go away?

[369258147abc]

ur awosme for staying strong and hope u get better and i wish i could stay as stong as u b/c my auntie died of cancer this year and my step grandma has lupus and my step grandfather has alzheimers soo yah i am tryin to stay strong and i look up to you !!! so yah stay in there girl and get well soon

~love katie

[369258147abc]

my brother has sezuires and he is only 10

[highlanderk7]

:( u should totaly fire your white blood cells :) , not making fun :) , 1 think i learn in life is bad things always happen 2 good ppl :(

[hkite]

I have APS, but haven't had nearly as many problems as you. I'm sorry you've been through so much.

[minx224]

you are an inspiration to people.... you are a very

strong person :) i truly admire you ^_^

[sexxystarr1009]

you are strong yourself.

[Elaine1436]

That's why they say live life to the fullest! =] I hope you get to live a very long life, and they find a cure for it! =]

[chatp12]

I'm so sorry, hun. You are a troooper! A lot of people wouldn't go online to tell their story, because they would be chicken. Stay strong, hun.

[tatitatertot1]

May i ask how you got it? my mom was also wondering about that

[MakeupbyAshley]

I had a stroke before they found out i had it. I wish they would of found out i had it before the stroke happened.

[tatitatertot1]

oh ok now i get it

[tatitatertot1]

You are like a hero or something because when i was really young i had a really bad Urinary track infection that almost lead to kidney disease which at my age could of lead to death and just the pain of that drove me insane but the fact that you could go through all that and still be able to talk about it to ppl and not be so self consience like i was for the longest time. that is just amazing... you are an amazing person ashley.

[WxMWifeyyy]

I do homeschooling online too(:

I'm trying to get out right now tho

cause the courseload is really too much

for me.

Good luck with everything(:

Love your videos.

[1IvoryLady]

While I was looking up Hughes Syndrome (Antiphospholipid Syndrome), I was so pleased to come across your video ... your description of this disease was easy to understand. I'm 51 and have recently been told by my Rheumatologist that I have an autoimmune connective tissue disorder that mimics Lupus (I take Plaquenil for that) I have also tested positive for APS and I am waiting for further confirmation on this. I'm hoping that a cure comes soon for your sake as well as others. Take care.

[MakeupbyAshley]

@1IvoryLady I was taking steroids for the last 6 years and it wasn't helping so they just started me on plaquenil too. it working very well but its a very harsh pill, be very careful while your taking it, and you take care too[:

[879345612335]

Im so sorry Stay strong! (im homeschooled too i used to be very sick when i was yourger i just got bether when i truued 13 i never been a kid til.l im 14 love your videos keep them up !!! If you ever just need a friend to talk to send me an email or something I know it's hard being young and being sick all the time

[shaunaasusann]

i'm so sorry! well you make great videos!

[MakeupbyAshley]

Thanks[:

[shaunaasusann]

no problem so do you like being homeschooled?

[MakeupbyAshley]

Yeah I love it, With all the doctor appointments I was missing so much school, and so much easier, because I have good day and bad days, and on my good day I can do school. Its just great[:

[879345612335]

My one cuz died when he was 9 from cancer i miss him tons

[shaunaasusann]

i'm so sorry that so sad :(

[879345612335]

its okay he fought as long as he chould he watching over me right now i miss him but i know he is okay in heaven

[mammabutterfly75]

I love your videos keep them up !!! If you ever just need a friend to talk to send me an email or something I know it's hard being young and being sick all the time.

[GreekProto24]

Im so sorry. My friend was diagnosed with athritis in 5th grade. She is on prednisone on in off. Stay strong!