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My Lupus Diagnosis | Living With Lupus as a Teen
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Күн бұрынDownload Abridge for Free: abridgeapp.com/LiveHopeLupusY...
In this video I decided to go back in time. Here is the story of how I was diagnosed with lupus. How long did it take you to be diagnosed or are you currently in the process?
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My name is Samantha Wayne and I have been creating advocacy videos on KZfaq since 2009. I created Live Hope Lupus in order to create a space where those with chronic illnesses could get information and support. Please subscribe to follow me along on this journey!
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DISCLAIMER: This content within this video is not medical advice. The purpose of these videos are for general education and to share my own experience. This content should not be used to self-diagnose or self-treat any health condition. Please consult a healthcare professional before attempting anything present in this video.
@vntgKiss 3 жыл бұрын
Oh my god I have never ever heard a story align so so much with mine, I feel really emotional. My symptoms began with Reynolds as well around 14/15 and unfortunately I have spent the last 8 years as a "medical phenomena" without insurance and un-diagnosed. I was given a Lupus diagnosis last week and to finally have the right disease to research and find resources for... how amazing it feels to know I'm not crazy and I'm not alone. Thank you so much for sharing this.
@gc-sharpe8130 4 жыл бұрын
Sorry, I actually was writing to say that I think it’s great you are doing this KZfaq channel to share your personal story with lupus👍
@nesrinun1 4 жыл бұрын
Glynis Sharpe did u see dr Brooke Goldner she has lupus in the past but now she is free
@kekebelen 4 жыл бұрын
We went to the same clinic! I was diagnosed at the age 9 year 2003. (I’m now 26) In my experience it took 4 to 5 months to get diagnosed. They told me I had anemia first, but they could not explain the join point and so much weight loss. Until they finally made more blood test and send me to my first rheumatologist appointment. I don’t think I understood as a child how sick I really was. But the first 5 years were the hardest. My teenage years were not normal. Believe or not I went to a lupus walk you helped organize. Your so inspiring and your a voice to us lupus warriors. God Bless were in this together.
@DiannaCarney 4 жыл бұрын
Thank you for this video. I recently was diagnosed with lupus after my gallbladder and lungs began to become affected we noticed along with the other symptoms and found out. It has been hard speaking up publicly about my diagnoses as I almost feel like it means something is wrong with me. But! I know that isn't true and I'm so glad to have found this KZfaq channel! Thanks so much.
@brooklyn7840 4 жыл бұрын
I was diagnosed in August due to a severe flare up that left me in the hospital for 2 weeks and i love watching your videos. I noticed many things over years too, the raynauds in the shower especially(my feet would burn so bad i had to turn the water cold and gradually ease it to hot), unexplainable patches of dry skin that never flagged anything, i even went to a specialist who said it wasn’t lupus. After august i’m now only on 10 mg of prednisone but still take 2000 cellcept + lots of others to manage the side effects of those. I will be rewatching more videos when it comes to start college in the fall, they really help with the anxiousness that is starting to come with transitioning to adult care in the next few years. Thank u!
@curliegirliehope 4 жыл бұрын
Hi Samantha, than you so much for this video. To be diagnosed at such a young age had to be hard because you are still a child and it had to seem like the world was crumbling around you, but you got yourself back up and fought this and I love how you are so strong and fight it. There are days where I feel like I can't fight it anymore but I push through. I hate the fact that sometimes I wake up and feel like my body can't make it through an hour before I want to give up and then there are days where I wake up feeling refreshed and feel good and then I clean as much as I can all day then the next day BOOM, I can't move. It sucks because everyday I take my leflunomide, prednisone, gabapentin and cymbalta and I feel like they don't work at all. But I am still here fighting this crap and some of the people around me are great and understand and then others don't, they feel like I am faking it. I actually feel like a failure some days because I can't do anything especially with my joint pain. I literally have to show people my positive ANA test results before they even believe me.
@evelynkrull5268 4 жыл бұрын
We were diagnosed at the same age! I had weird test results and symptoms so my pediatrician said that with the symptoms it was either lupus or leukemia. I had 3 months of testing that rules out the leukemia and my pediatrician referred me and said we would "diagnose via treatment" I didnt get an official test result diagnosis until 7 years in, but my specialist said my symptoms were obvious enough to treat. I'm glad that they did that. I'm thinking I might possibly have EDS [too] and been sick my whole life. I know it's super rare but I was confirmed hypermobile and I've seen Jessica kellgren-fozards videos and it sounds a lot like my childhood. I'm hoping my current diagnosis wont hurt my future diagnosis journey.
@jonkicker1278 4 жыл бұрын
I tried Abridge after you mentioned it in a previous video and I love it.
@suehanson296 2 жыл бұрын
Hi I just watch your video I am so sorry about your lupus I just find out myself I had lupus for 4 months ago and it really was terrify me but watching you really break my heart and I hope you will get strong and we all have to do so I have so much hope they will find a cure and good luck to you and thank you so much for making the video I truly appreciate it ❤️
@SuperLoopieWoman 4 жыл бұрын
Thanks for sharing your story! It has helped me so much!
@SuperLoopieWoman 4 жыл бұрын
PS I love Abridge- it's helped me so much!
@kristinemoore9415 2 жыл бұрын
I was 14 years old when I started feeling sick I was diagnosed at 15 years old and I am now 52 years old I have a lot to say you can live with lupus and I’m not in anyway going to say it’s easy because it’s definitely not I have systemic lupus and discoid lupus But I want you to know I relate to you because of your video
@paulinefollett3099 4 жыл бұрын
A very interesting video. Thanks for sharing your experience. I have had SLE since I was 25 years old. I am 53 now. I have cerebral lupus which is quite rare. My onset was more difficult and unusual. Even now I have many months where my balance and walking is effected so I use a walking stick and a walker. Yet other times I can walk normally. I have spent a lot of time in hospital over the years. Last year was not a good one. I was in 2 hospitals as my blood sugar kept crashing. The doctors think I may have developed autoantibodies to insulin. Yet my glucose is okay at the moment.
@HealWithSamantha 4 жыл бұрын
Ahh that is a tough version of SLE for sure. I know one other person who deals with it. Thank you for sharing!
@RandomVideos-ck1tw 4 жыл бұрын
Dr. Brooke Goldner author of Goodbye Lupus. Also look up Dr. Neal Barnard on Reversing Diabetes m.kzfaq.info/get/bejne/fNSAqdVetNOwXZc.html&t
@vanderj8 4 жыл бұрын
Hi Samantha, Thanks again for finding the energy and courage to make this video. I've been following your channel for quite some time now, watching on and off and just wanted to let you know how much I appreciate your initiative to connect with people going through similar situations. For transparency, I must state that my personal health is better than I deserve, given the way I treat my body (not much sleep, working too much, not always eaten healthy). I have really nothing to complain about. So why do I watch you videos? Well, my wife and our three daughters all suffer from varying challenges: Raynaud's, Sjögren's (unconfirmed), Interstitial Cystitis, Primary Lymphedema Praecox, and more, like lung issues and allergies). So, no, not Lupus exactly, but your videos do help me understand their perspectives better time and time again, and I am very grateful for that. If you don't have to suffer day by day, and you are fortunate enough to live a pain-free life (physically), it is very easy to become unconscious of what others are enduring silently as they also try to go through life smiling. You help me stay grounded in their reality and I am grateful for it. Thanks, stay safe and keep up the good work you are doing! Love, Alex. All the way from the Netherlands P.S.: No need to dismiss your emotions. You have every right to experience them and sharing makes others aware or better realise what you are going through. 💚
@sfree322 4 жыл бұрын
Alexander van der Jagt, If only more family members of people with chronic illness would try to have the level of empathy you clearly do!
@vanderj8 4 жыл бұрын
@@sfree322 💚 We're in this together and it has made us stronger. Not always fun, sometimes excruciatingly hard, but we found a mode, a rhythm together that works. It takes a team to make that happen and I'm proud of how the ladies handle their situation with positivity (most of the times) and with a (what is it I still) can-do mentality. I hope with you, that all families find the time and if needed the right therapy to get to a place where they can accept their 'new normal'. I've been amazed by how flexible our minds can be, if we put in the effort and time to adjust to changing circumstances. Wishing you all the best.
@achannelforschool 4 жыл бұрын
Hi Samantha, I'm so grateful I found your channel. I got diagnosed with sjogrens at age 15, back then my doctor said I had a hint of the lupus butterfly on my face. I'm 22 & we're watching for lupus or hashimotos. In the same appt my doc told me about having a high risk pregnancy. I'm devastated. I'm a prenursing student & I want to start my family after I'm done with school. I've managed to stay off of medication. How is this affecting you in your young adult life? Are things progressing? Is medication helping? Can you support yourself? I would love to know.
@drjcwardjr 4 жыл бұрын
Your story and age of diagnosis are very similar to my daughter’s history.
@LyricSky1 4 жыл бұрын
Omg I love that thank u ♥️
@Bob_Fer 3 жыл бұрын
I’m finding that I’m having trouble with energy at the end of the day and can barely push through till bedtime. I don’t generally make a lot of plans after work anymore because I never know how I’m going to feel. It gets to me after a while.
@elizabethsamuel2894 7 ай бұрын
I have also been experiencing lot of symptoms but because the bloodwork isn’t completely showing everything the doctors are looking for; the doctors think I am crazy
@tmor8764 3 жыл бұрын
Has lupus caused very painful knee pain that has been diagnosed as “runners knee” with no relief? Or swollen feet with cold toes?
@chrisrishermn Жыл бұрын
Have you tried licorice root?
@MarieObscured 4 жыл бұрын
Oh I remember the days when I was still playing basketball. Pushing yourself so hard to keep up with the other girls when your body just wouldn't cooperate. I was with the same team and coach for years, so whenever I would pass out or collapse everyone would just brush it off and tell me to get back in! Oh wait I had lupus?! Who knew!! 😅
@HealWithSamantha 4 жыл бұрын
Same here. I never missed a practice in high school. Seems crazy now!
@MarieObscured 4 жыл бұрын
@@HealWithSamantha Totally off topic question and I know you've touched on it previously but, have you talked to your rheum about planning a pregnancy? We just found out that I would need to come off Benlysta in order to get pregnant and that it might not work/help my lupus if I were to go back on it after... I'm curious if others have been told similar things even with other medications? Haven't been able to find much info on this topic.
@marwaafifi5748 3 жыл бұрын
Hey ...I have Lupus ... regards from egypt
@bonnielentine4490 3 жыл бұрын
💛
@nesrinun1 4 жыл бұрын
Can u answer me are u healed now or not
@HealWithSamantha 4 жыл бұрын
n f I am not healed. I still have lupus. I do feel better with my change in diet and lifestyle.
@lisaadapelletier 3 жыл бұрын
Why does it takes on average 3-6 months for a lupus diagnosis?
@sjord7 3 жыл бұрын
It looks like I have lupus, I'm trying to get a diagnosis now, for the latest bunch of symptoms that started 4 months ago. But looking back, knowing what I know of all the symptoms, I've probably had this for 25 years.
@MrsDogLover 4 жыл бұрын
Did you ever contract mono?
@HealWithSamantha 4 жыл бұрын
Renee yes I did before my diagnosis.
@jameswayne5391 4 жыл бұрын
Did you ever have issues or symptoms with your eyes?? Styes?
@sabrinalewis4193 13 күн бұрын
Hi! My daughter is having issues with one of her eyes. I thought it was a severe case of pink eye. We went to the ER 3 times and did a battery of test and they said it was positive for an autoimmune disease. We’re still going to the doctor.
@akd3672 4 жыл бұрын
Do you go for regular eye check ups due to usage of hydroxychloroquin??
@achannelforschool 4 жыл бұрын
You generally do or if you have sjogrens which she also has.
@golamkibria414 4 жыл бұрын
What is Lupus? 🙄
@AaizaTahreem 4 жыл бұрын
An autoimmune disorder with certainly unknown causes. The immune system that is supposed to protect someone from foreign invaders, begin to recognize a person's body as foreign and begin to attrack itself. Actually immune system is trying to help but it ends up in damaging a person's own tissues and organs like joints, blood cells, skin, kidney, brain or lungs.
Jason Derulo
Рет қаралды 30 МЛН
Osmosis from Elsevier
Рет қаралды 2,3 МЛН