Someone You Know May Have Lupus

Рет қаралды 69,172

12 жыл бұрын

Due to extreme fatigue, pain and stiffness a morning routine can be a real challenge for somebody with lupus.
Lupus is an incurable immune system illness, probably genetic in origin and mainly suffered by females.
You can learn more about lupus at www.lupusuk.org.uk
Please share this video to help raise awareness of this incurable and debilitating condition
This video was shot and edited by Michael J Berwick - vimeo.com/user2661390

Пікірлер: 87

@nevo1010 10 жыл бұрын

My wife was diagnosed with Lupus yesterday,her bones hurts all the time allways fatigue and tired and really sad about it.but I tell her that we being married 23 years and I would never leave her alone,this going to be my fight too and we not going to lose with god by our side.Thank you for the video and god bless you...

@kimlibrisk9968 2 жыл бұрын

@Courtney Davis omg he left you my husband wouldn’t do such a thing. I’m praying for you. I know it’s rough I deal with the pain everyday we will get through this together.

@kimlibrisk9968 2 жыл бұрын

@Courtney Davis amen, amen

@evajesu1835 2 жыл бұрын

Is there any cure or medicine for this my sister also is affected with this she is just 26😭

@evajesu1835 2 жыл бұрын

@Courtney Davis yes people will leave us but God is the only one who will stay with us he will never leave us. The love of man will fade away but Gods love is eternal.. God is all sufficient

@Bessie66 2 жыл бұрын

I have been diagnosed with it today - life has to take a different direction now. Certainly not one I planned after working 38 yrs in the NHS. I wish you both well x

@mlkm30 9 жыл бұрын

looks like me in the morning.. lupus is no joke. but this is not the toughest part. imagine being a single mother of two and with lupus. when you can not help your children, because of the pain. when you can't bring them to school because of the pain and stiffness in the morning and swollen hands, fingers and feet. when you can't cook for them because of the pain. when you try not to cry infront of them but your eyes fills up with tears when you try to walk. this is not though, the toughest part is to see your kids and you can't be there for them even when you want it the most. it is no joke.

@kimlibrisk9968 2 жыл бұрын

I know this is me too. I couldn’t even get me kids to school in time because the pain it’s so overwhelming. Praying for you

@lauriewilson4741 2 жыл бұрын

Yes 😟 can’t get your bra on. Cannot pull a shirt over your head. Fatigue.

@anzactea 11 жыл бұрын

With staying up too late a person without Lupus can usually recover with a cup off coffee or some form of pick me up. Or just by sleeping a little longer or going to bed sooner the next night. A person with Lupus feels like they were hit by a truck with no physical signs on the outside. They may not ever be able to able to "catch" up. They feel like they have the Flu with the aches and pains, headaches and nausea. No amount of sleep will make you feel Normal !!! I live this way Everyday.

@janicesmithroane7 11 жыл бұрын

OMG! I thought that was me! Yet, I still smile and pray and pray and smile! God is so good!

@Bessie66 2 жыл бұрын

This video is so relatable to a person with lupus on a morning - particularly putting on shoes 😞

@LUPUSUKOfficial 12 жыл бұрын

Thank you for your kind words. I'm glad that you find the video helpful. It is fantastic when we receive feedback because it helps us when we come to consider future video projects.

@carolinemabbs 12 жыл бұрын

Please do more videos like this, made me feel loads better to see someone else going through my morning agony.

@laurenneloms7953 10 жыл бұрын

This was great. It's so nice to see a practical visual example of Lupus. No, it may not show the entire reality, but I don't think that was the intent. This video allows people living in a fast-paced reality a brief glimpse of what it's like to start your day when you have lupus. Excellent video and thank you.

@LUPUSUKOfficial 12 жыл бұрын

Lupus often causes extreme fatigue which can be very debilitating. Often somebody with lupus will need to rest and recover for a long time after doing very simple activities such as getting out of bed or taking a shower. It can also cause aches and pains in the joints and muscles. Some people with lupus can be incredibly stiff in the morning and have difficulty moving. Thank you for your feedback. This is our first video and and so any constructive feedback would be welcome for the future.

@Aretha1963 8 жыл бұрын

I know that this will help for my friends and family who want to understand a small portion of what I feel. Though we are all different and are effected differently, we are survivors everyday even we don't feel like it. Thank you for making and sharing this.

@thecheesemouse 5 ай бұрын

I know its going to be a rough day when the wave of crushing exhaustion hits right before noon, and the pain feels like knives being shoved under my kneecaps, my arms feel like burning pulled pork, and the top of my head hit with a hammer. Its like hellraiser levels of torture

@MichelleAndersonMD 12 жыл бұрын

This is the BEST comparison video that I have ever come across. I am a member of several FB support groups and I shared your video with them. I was just telling someone that I shaved my legs today, but was exhausted and had to lay down afterward. I really appreciate this video I can share when people ask questions. The video shows that it's not just me.

@CappySays 10 жыл бұрын

thank you for making and posting this video hoping for awareness - but at least it gives those of us validation that it is not in our head - it is a real challenge - very real.

@nicoleseldon6388 12 жыл бұрын

Love this video. This depicts what i go through every morning. Many people at my job dont really understand what mornings are like. I will pass to them to show. Thank you!

@LUPUSUKOfficial 12 жыл бұрын

We'e glad you like the video. We did promote it on our Facebook page on the day it was released and I believe quite a few people did share it. Hopefully next time, even more people will share it.

@angie-mp7cr 10 ай бұрын

thankyou for showing other people what it is really like. im literally sat in my bed in tears crying because everyone around me thinks im lazy or unmotivated whenever i have trouble getting up for school in the morning - missing days here and there. it is just so fucking frustrating sometimes feeling so extremely tired all the time - especially in the morning. like i cant do stuff as quick as my classmates. it doesn't work like that , i dont work like that. and im learning to accept and love myself for it.

@Lunablue111 11 жыл бұрын

I have lupus and as many others i appreciate what you did really wish that people knows what we go thru. every day ..wish we have something supporting as in libya!!

@MzNobehavior 10 жыл бұрын

The daily struggle we have to go through as a lupus sufferer

@pantegohummus8215 8 жыл бұрын

Diet high in fruit and veg and vitamin D supplements has helped me so so much

@LUPUSUKOfficial 8 жыл бұрын

Hi Pantego. It is great to hear that you have found something that helps with the management of your lupus. Do you know whether you had a vitamin D deficiency before you started taking the supplements?

@pantegohummus8215 8 жыл бұрын

Yes my vitamin D was low for a year.

@studytubeofficial 2 жыл бұрын

@Marian Cook is it true???

@studytubeofficial 2 жыл бұрын

@Marian Cook how long did it take to cure?

@LUPUSUKOfficial 10 жыл бұрын

In case you need it, you can download a free information pack from our website. If you need anything else, let us know.

@suzannorman472 8 жыл бұрын

Yep I have lupus and being a teen ur supost to be having fun and living but I can't

@jesusisthetruth4131 7 жыл бұрын

we felt like an old grandma

@joshuapink6677 5 жыл бұрын

georgi lm

@yassun3653 3 жыл бұрын

Me every day of the week! 😭

@twelv 5 ай бұрын

Thank u

@christinemott2878 7 жыл бұрын

Thanknyou for creating this video. Ive gotten to the point where im tryi g not to hide who i am and what has happened to me. Im not embarrassrd to have sle and discoid lupus..it has made me strong beyond belief. I may cry kick and scream but im tougher when i come out of it alone!!!

@lilianarleth1882 8 жыл бұрын

I have lupus and it sucks, not going to lie. I cant do many things I use to do .

@alexs.3383 8 жыл бұрын

How long have you had lupus? Do you feel like some of the symptoms were present before diagnosis? I feel like before diagnosis I felt average but after I feel more fatigued but can't tell if it's the lupus or not

@lilianarleth1882 8 жыл бұрын

Alex S. I was diagnosed in February, and yeah, the symptoms were there but I never thought it would be lupus. to be honest, It wass the first time I even heard of the illness.

@Shyann1 11 ай бұрын

This is so me. The part where she walks outside and looks fine...but people dont see all the suffering she goes thru.

@harmoniemartin4937 9 жыл бұрын

This video only pictures lupus sufferers as being more tired than other people.. what's the difference with a depressed person then? Being diagnosed with lupus myself, I must say this video might as well've shown the othe effects of the sickness such as joint/muscular pains, rashes, frequent migraines etc. Or eventually tiredness after exercising. These are the toughest things we have to face.. not merely having trouble waking up in the morning

@joannecarroll5504 8 жыл бұрын

I imagined it was probably intended to be part of a series of short clips & this was just the most common complaint in the series. Nobody wants to hear us ear-bashing them with long boring ads, they just leave the room, but regular brief messages on the different things we face could be more useful in raising Lupus awareness ... I figured they'd have one on how we can't sit out in the sun & watch our kids play sport without getting v sick ... showing like this one did, how life with Lupus differs to everyone else's. There is never a day when I'm not in at least one type of pain or another, but I've grown used to taking pills to reduce that. You can't take a pill to get rid of the chronic debilitating & ongoing fatigue that stops you from living any kind of normal life - I know many other Lupus sufferers who agree, despite some suffering pain that equates to childbirth or above on the McGill Pain Index. Oddly, I've only ever met 1 Lupie who doesn't suffer pain - just fatigue.

@auroniavaswarna387 6 жыл бұрын

always happen with me.I don't know how to cope with this...even if I want to but the bidy pain,fatigue kills me from inisde to go out or versity even sometimes I dnt feel ok to do anything.

@nikkinatalia1869 6 ай бұрын

I’ve been on the couch for two days in and out of sleep. I feel like I could hibernate for a month. People really don’t understand unless they’re one of us.

@brittaneyblossom 3 жыл бұрын

Hi so I’m discovering this video at a time when I really need support. I am daughter of a Mommy that lives with Lupus. I live in NY and she lives in SC she’s a retired officer. And though my grandmother lives with her she does not give my Mom the support she needs. For example if my Mom gets sick and needs to go to the hospital she will not take her. She also watches my two year old niece while my sister is away in school. My sister and I need more support in order to help our Mom. She cannot live alone and so we agreed that she should move with my sister since she watches her child. However my Mom has seizures so we’re afraid that while my sister is at work or school she could be watching my niece and suddenly have a seizure. My family isn’t supportive and my Mom’s health is getting worse. If you all could offer advice, resources, anything that can help I would appreciate. I’m a very private person but I’m at a place where I’m stuck and don’t know what to do.

@jesusisthetruth4131 7 жыл бұрын

u have to be strong,that is the only choice u have,we have

@Lucy-pv7jh 11 жыл бұрын

Well one is a Chronic and incurable auto immune disease and the other isn't for starters...

@ktspencer6793 10 жыл бұрын

I was diagnosed with Lupus at age 21, I am now 25 years old. I am of hispanic background. My friends could not believe it, i remember telling my best friend's mother about it and she burst out in tears, i had no idea what this disease was. I thought only unhealthy people, like only americans could get it, due to their bad diet, but not hispanic people. I always ate home cooked food, my mother home cooked Peruvian food, i rarely exercise, i was not overweight. i did not eat out at fast food places except on rare ocassions. My family judged me when i told them i had lupus, they didnt understand what Lupus was, they didnt support me, but my husband who is Eastern European and my best friends mom did.support me. Although i feel like i must have been misdiagnosed, i have really bad symptoms, i may go back to my country one of these days and get tested there for sure to rule out if i do have lupus or not. So far i have been tested twice and came back Positive. Lupus doesnt discriminate, i wish u all well.

@joannecarroll5504 8 жыл бұрын

I'm Scottish & Fitzgerald Type 1 Caucasian skin (the palest white category) & I have Lupus. I had a great diet according to my doctor; high in veg, low in red meat, I don't smoke & I rarely ever drink alcohol - all of which is all totally irrelevant to Lupus - but my point is that I was not one of the "unhealthy white people" you described ... According to the statistics, I am in fact one of the least likely people to have Lupus & your own risk greater than you were aware ... Women account for 90% of Lupus diagnoses & men only 10% ... Women aged between 15-44 (child-bearing age) are at higher risk of Lupus. In USA, Lupus is more common in People of Colour than in Caucasians. Lupus discriminates VERY strongly against people of colour - Latina women suffer twice the rates of Caucasian women & African American women 3 times. Latina women in particular are also more likely to suffer some complications that are less likely in Caucasian sufferers. - both you & your family seem sadly uninformed & should perhaps reach out to a reliable source to get the support & education you need. www.lupusny.org/about-lupus/who-gets-lupus

@valariawillis 6 ай бұрын

I felt like this dismorning

@Lupusharv 12 жыл бұрын

@suomilaaseri just search Lupus survivor then tell me if lupus is like waking up after staying up late. This was a good video and if it gets one person interested to learn more then it has succeeded.

@jesusisthetruth4131 7 жыл бұрын

omg this is so true

@megnarava3036 7 жыл бұрын

plz make more videos like this. i am a lupus patient myslf. n i know how difficult it is to live wd lupus. one feels more worse when the rest of the world doesn't even know wht it is. i m facing a lot of prblms. please help.

@LUPUSUKOfficial 7 жыл бұрын

Hi Megna, I'm glad that you like this video. We have produced quite a few more since this one, please have a look at our channel. I'm sorry to hear that you are experiencing a lot of problems. If there is anything we can do to help, please let me know. - Paul

@LivingDead53 3 жыл бұрын

I don't know what I have. I'm gettin' tested at the VA, which could be my grave either way. Anyway, I drink a ton of caffeine, and I have since I was a teenager. It seems to help me stay awake and also reduces pain. I had COVID and reinfection, I think, and my bones hurt so bad for a while. It went for my bones, even before they knew it could. Cymbalta, an antidepressant, has taken my pain away. You might want to try it.

@paulsheep1719 12 жыл бұрын

It is the contrast between the girl not being able to move and the active girl which makes it clear. And that she takes pills on the couch.

@jahrro0491 8 жыл бұрын

Hi guys. .I was diagnosed with SLE LUPUS ON MAY nd it's three months now. I lost wait nd I feel tired evrytime.i dnt feel of doing anything. I was admitted four times this year at different hospitals..nd my periods stoped for four months..last week I collapse nd they rush me to hospital nd at my BP nd SUGAR DIABETES was higher nd I also have sugar diabetes nd m using injections everyday. .m new to this SLE ND M AFRAID I JUST CAME OFF TO HOSPITAL TODAY ND THIS IS KILLING ME ..m 25 years old nd I have degree nd m about to start my future

@ThirdEyeOpen123 12 жыл бұрын

does this mean i have lupus?

@margaretlatocha1474 8 ай бұрын

That's pretty much the deal

@brunoder303 7 жыл бұрын

My physician sent me to take blood test om Anti-SM and Anti-SSA(RO), the results will come in 10 days, it will answer so many things if it turns out that i have lupus

@LUPUSUKOfficial 7 жыл бұрын

Good luck with the tests Bruno. If you need anything after you get the results, please let us know.

@riehlgirl1005 4 жыл бұрын

There is no way I could wear those high heel shoes. Very painful with Lupus.

@LUPUSUKOfficial 4 жыл бұрын

It is important to remember that everyone with lupus is different. The person is this video does have lupus and it was filmed in their home.

@lisaeaster4665 2 жыл бұрын

I recommend Dr.Auchi on KZfaq channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..kzfaq.info/love/6tA16t1IlKx1bY93lc2rcg

@joshuapink6677 5 жыл бұрын

I can comment to that u feel a old granny fi real

@lisaeaster4665 2 жыл бұрын

@RMSAnalyst 12 жыл бұрын

LUpus Patients Understanding & Support (LUPUS) offers free information and free online psychological support.

@husky7796 7 жыл бұрын

I have lupus it's a pain in the ass and I'm a white male so I had like a 1% chance of having it and I have it I am literally getting a tube down my throat next week because of it. oh and I was diagnosed when was 12...so thats like a 000000000000000000.01%chance I'm not even exaggerating cause ima white male and I'm was 12.

@LUPUSUKOfficial 7 жыл бұрын

Hi. I'm sorry to hear that you have been diagnosed with lupus. It is much less common in males and white europeans, but it does sometimes happen. If you would like to connect with other men who have lupus we would be happy to put you in touch with some of our telephone contacts? I hope that your procedure goes well. - Paul

@marywilliam5887 3 жыл бұрын

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@NBM09 5 жыл бұрын

I have lupus 5 years. I have got 4 children and I from Kazakhstan. I want learn English. Because many information about my problem. I'm Muslim woman. I want talk with women's the problem. Please will call me across the Skype.

@LUPUSUKOfficial 5 жыл бұрын

Hello. If you want to talk to other women who have lupus, I can recommend that you take a look at our online forum at www.healthunlocked.com/lupusuk

@NBM09 3 жыл бұрын

@Marian Cook thank you so much. I will send to you message on email