"GMA" Exclusive interview focuses on Venus William's diagnosis of the rare disease that affects 1.3 million people. For more information, click here: abcnews.go.com/Health/w_MindBo...
So glad she has done well managing her symptoms since her diagnosis. Does anyone else recall a few years of commentators calling Venus lazy, unfocused, less determined than her sister, lacking the same fighting spirit as Serena? The entire time while she was fighting at the highest levels of tennis she was struggling with a debilitating condition. Gratifying in a weird way that those commentators were so, so wrong. Imagine how hard she worked and fought to even make it to slams with such a condition!
Christopher Michael she is the most hardworking woman in the sport of tennis I just wish she could get herself 100 and win one more Wimbledon and one more other grand slam she have it in her even at her age
She has a lot of personal support; that's helps. I also have sjogrens disease, with no one around and a community that keeps me up at night, so never feel rested. THAT I have no go go juice. ITS HARD TO EXCEPT. I WAS FUN, AND NOW I LIVE IN BED.
Sjogren's Syndrome is not a rare disease. There are 4 million people in America who have Sjogren's and fatigue is one of the most debilitating symptoms of the autoimmune disease. Doctors just spend a lot of time telling you it is something else. Venus has been a great ambassador for us all!
@mdoug7702 I got a uti for the first time at 40. The infection was treated with various combinations of antibiotics, but it eventually spread throughout my body. From my organs to my brain. Sepsis/abscesses, etc. I ultimately had a cardiac arrest resuscitated after 11 minutes. Before the cardiac arrest, i had brain swelling and organ failure, and I was months in the ICU, so there wasn't much hope for survival. I was on life support for a week, and they tried some next generation antibiotics. Luckily for me. I survived. I was fit and healthy, which is ultimately the thing that saved me. But recovery was horrendous. I was temporarily paralysed, had no speech, no coordination and couldn't eat. Two years this September will mark my exit from the hospital in a wheelchair almost bald as i lost my hair and fingernails. I weighed less than 5 stone and still struggled with walking. Now I'm planning on going back to work. Few final hurdles. Fatigue, pain from nerve damage, and constant infections from imuran complicate things, but I'm aiming to be as normal as possible.
I myself have been battling this god-damn disease since I was 21. It wasn't that severe in the beginning, with occasional fatigue and dizzy spells, but after a while it got worse. I passed the postgraduate university entrance exam at the age of 22 being among the top 10 in my field of study. I remember going to the bathroom 4 times during the exam, trying to alleviate the pain by exercising after the symptoms got worse. It affected my relationships, my mood and everything. Most of all, It affected my studies and several job interviews. Even my family have grown indifferent, sitting there watching TV while I'm writhing in agony. Now, I mostly keep it to myself! I just wanna tell my fellow sufferers that they are not alone in this and I do hope and pray most fervently for their speedy recovery, I'm sure we are special. We may be suffering but we are strong. I believe it!
Thanks for your comment, I was diagnosed 6 months ago and battling with fatigue. People may think I am just lazy but I am not. I feel beat up by 4 pm. I used to take 2 gym classes a day until several years ago but not anymore, I have to keep drinking water so I can't do most retail jobs either
@@jayecotter5718 I understand. I use to work at the gym as a trainer, rode a bike for miles everyday, gardening, everything. It was all taken from me and people can't truly understand how miserable I feel. I just want my life back so I can enjoy my family. God Bless
It makes so much sense now. All of those matches where she would have the lead and play amazing and then just...fall and lose in such weird ways. Wow this makes her journey and her GS wins even more spectacular because all those years she was really fighting hard and pushing herself to win....Love you Venus. I hope you win another GS in 2016. Another Wimbledon, AO, or a USO would be nice...
I live with Sjogrens and relate to so much of what she said, especially about her arms feeling heavy. Mine literally feel like I have 25 lb kettle bells dangling from each arm some days. One day you have energy and are doing well, the next you are walking like a 90 year old due to the pain and heaviness. Its no fun.
I recently got a positive ANA anti-SSA blood test. I was fine and full of energy until I took antibiotics and can barely get out of bed now. I think the antibiotics triggered what the doctors think is Sjogrens. All of the joints in my body feel heavy. Is this what Sjogrens type heaviness feels like?
@@coolbreeze5683 My joints ache all the time, but in a flare up it feels like I was just dropped into Jupiter's gravity where the effort to lift my arm is just not worth the amount of energy it would take. So I sit or lay on the sofa and binge watch Netflix on those days. My husband cooks or I have food delivered. I'll also say that on good days I go overboard on getting things done. The entire house gets cleaned, for example. Don't do that. Do not do that! It's usually the next day or the day after that that I'm then on the sofa, unable to help with much. I'm slowly learning my limits and forcing myself to do less each day because my body needs me to.
my left arm felt heavy almost 2 years now.. been going to doctor to check on the join problem.. even going for physiotherapy session but still not better. then recently got diagnosed with sjogrens. now finally being able to join the dots
I've got it and for the past 6 years it has been destroying my teeth, which insurance does not cover one penny of!!!!! It also led to an even worse diagnoses last year of Lupus, which is complete HELL! I admire and thank Venus for coming forward and bringing light to Sjogren's!
I am so sorry you are going thru this, I also have Systemic Lupus , Sjogrens , Raynauds, and Hughes Sydrome .. it sucks , but you cant let this illness beat you and let it rule your life .. be strong and take care of yourself . always listen to your body. Good luck and not sure if you believe in God but I would keep you in my prayers
The reason why it's destroying your teeth is because of the plaque around them. True, you don't the salivary flow to self-cleanse, but you have only to blame yourself for not having a better than average diet and more frequent brushing and flossing.
@@aomana4357 It is not just lack of moisture-it's the protein content and composition issues which change the chemical balance in the mouth. Frequent brushing more than 2-3x/day for anyone can be damaging, as can brushing immediately after eating. No one should brush before 30 min are up. But since damage/acids occur then, everyone should rinse with water at least, or better with water and baking soda (not brush-too abrasive), or chew xylitol gum right after food. Sjogrens' folks need a Soniccare brush and sometimes need moisture producing meds, Rx toothpaste and mouth rinse with extra fluoride, mineralizing pastes, Magic Mouthwash for burning mouth syndromes and other medical interventions for mouth sores and geographic tongue, thrush, etc. Sjogrens' inflammation can influence bone loss which can affect jaw bone and success of dental implants. If you-the commenter- work in health care you have a responsibility to your patients to become more educated and not blame patients for their traumatic symptoms. pubmed.ncbi.nlm.nih.gov/18362310/
I have Sjögren's and each time I go to my doctor, he'd laugh and tell me it was all in my head. Finally, after years he said I had Sjögren's. I lost all my teeth. Being intimate made it uncomfortable for my partner, when I had one. Luckily, Venus has money and probably is getting top-notch treatment, unlike many of us who don't have the money to buy the products we need. Hopefully, Venus doesn't lose her teeth. It's starting to become worse for me. I have to have water with me at all times, especially at night. I literally feel as if I'm suffocating because my throat gets extremely dry. It's really scary, but I do not allow myself to panic. I hope that Venus is able to get all the treatment and help so she doesn't have to get as bad as I have. People don't understand us. Many friends think I'm lying and don't want to hang out. This really takes a toll on ones body. I have fibromyalgia and lupus, which doesn't help much.
I relate to this. I have dry mouth, and I noticed my throat will sometimes get very dry too. I need water w/ me constantly. Chronic hand pain and other areas too... I just got blood taken to test for Sjogren's today. God bless you.
After nearly 3 years I have been diagnosed today. I have been suffering terrible painful swelling in parotid glands and recently had a tumour removed from right gland (an increased risk of pleomorphic adenomas for sjogrens patients....be vigilant of any lumps) early onset arthritis since 18 (now 43), stomach issues, dry eyes and mouth, extreme fatigue and joint pain, dizziness.....list goes on. currently being investigated for asthma and eyes to be checked by neurologist so cant start any medication until tests complete, at least another 3 months :( Im exhausted. Thanks to people like Venus I no longer feel like I am imagining all these symptoms! Wouldn't wish it on anyone.
So,glad I found this video. Thank you for being honest. With any new disease you mourn. I have now mourned several times and pray she feels well soon. Even if it is not her current normal she will find a normal maybe just not this one.
I myself was diagnosed with this recently and it is a very difficult disease has so many symptoms but thank God for my husband being in the military. I was able to see all the necessary doctors... treatments vary for ppl as well as symptoms... Being active this sucks... certain things trigger it and can cause u to be bed ridden at times... praying for all who suffer from this... and those who are but dont know it yet...
los enfermos del Síndrome de Sjögren no tenemos lágrimas porque en el mundo hay demasiadas lágrimas, nosotros hemos sido elegidos para sonreír. patients Sjögren's syndrome have no tears because the world has too many tears, we have chosen to smile.
What I find interesting about this interview is that every time she talks about what she does every day and what she deals with the interviewer keep saying are you gonna come back or you gonna come back. She is enough just getting through every day with this illness I know because I have it. It’s awful sometimes. It’s even more awful because people can’t see it and then they ask you will when are you gonna do more ..when are you gonna do more ..you do more when you can!!
Thanks for sharing. I too have Sjogren's and empathize completely. You're amazing for being such a great athlete despite fighting through this journey.
I have just been diagnosed with this Sjogren's syndrome. I did not know what was going on for a long time. I just felt sick all the time and very weak and tired. I had re-occurring upper respiratory infections, bronchitis and pneumonia. Would run fever at night however when I went to the doctor, did not have a temperature. I thought I was going nuts. Now I know this is not a life ending illness and know that the tiredness and sickness is not in my head.
@@bernadettewalker2067 I could drink a gallon of water a day and I still have dry eyes and dry mouth eventually your teeth they get shot. Don't be discouraged just seek out treatment. Don't settle for a physician that you're not comfortable with or who is not listening to you!!! Sometimes it takes a while when you get the position that treats you like a human being and doesn't ask you a thousand and one questions once you tell them what symptoms you have and tells you yes we can do something about that. ; you're in the right place!!! Hang in there and know you are not alone. There is medication they can give you for the dry eyes and dry mouth in pill form I can't think what it is ; Sorry about that. My doctor didn't put me on it because he said it caused heart palpitations so it wasn't good for me. Keep searching for a really good Rheumatologist!!!! Support if you need it also. Best of Life , Full thriving Life & Above all Hapiness , Peace with who you are. Your Dx. Is not your identity (Something you deal with ) Much 💕 to you💯
I have been diagnosed with Sjogren's and I am not doing well. The dry mouth is so debilitating. Dry as in no saliva. I am glad to see she is doing so well. I hope I will get there also ;(
@@sungspatta6123 I like those xylitol lozenges. Recently I've had to cut back and just use Biotene, which helps, but it doesn't last all day and is expensive (compared to normal mouthwash)... but yeah good suggestion nonetheless. I once learned some breathing techniques from a scuba instructor (he went on the Mikhaila Peterson podcast) and he taught me to try to keep my tongue pressed on the roof of my mouth (behind the front teeth) to have deeper breath+ better saliva production. I think it helps the more I do it.
Wow, I never knew this is what she had been suffering with….it’s interesting hearing her talk about this as it was so new to her then. I am a year or so on from diagnosis myself - it’s nice to hear someone else talk about it who is so well known! 🧡💚🇬🇧
Thanks to you I told my doctor to test me for Sjogren 12 years ago. I tested positive but at least I learned understand why I was so tired all the time.
I have Sjogren's syndrome and SLE I don't know how I knew but I've been watching you since you and your sister had the same and when I saw your hair missing on the sides I just thought to myself I wonder if she has lupus but like you thank God I've always stayed active even when I didn't feel well I don't know how I did it other than the grace of God and my mother wasn't really trying to tell me what was wrong but I had been with that condition since I was a child I knew that from my hair my symptoms couldn't go in the sun but I wasn't diagnosed until way until my 30s damn near 40 years old so all that time I went without treatment and it was always rushed to the hospital with what I thought was an allergic reaction thank God I always came up on top and didn't lose my life it is a tough diagnosis to live with but I live with it like I don't have it and at the same time you reminded on the daily basis I'm so proud of you and yes I was often called lazy as a child and it was nothing lazy about me it was just like the wind would get knocked out of me for a couple of weeks and I was too busy trying to keep up with my four other siblings nothing could stop me it just has a negative connotation to a lot of people are ignorant to the condition don't ever listen to them whatever you do don't listen to them or other Physicians I tell you not to have children not to get pregnant and very negative and they're actually scared to treat you! I'm older than you but somehow I knew and when it came to Whitney Houston somehow I knew it then I just don't know how but I knew somehow we were similar and mind you I wasn't diagnosed then. you are strong fierce so much potential and a force to be reckoned with remember that when you're having one of your most tiring days! I pride myself on just pushing and pushing and pushing through the only thing is when I need to rest I don't and I realize that's because I was called lazy or why are you sleeping I was very thin and lanky and people kept asking my mother do you feed her and my mother was like of course I feed her! somehow deep inside I knew maybe something was wrong but I knew I could do everything everybody else is doing I thank God for that and it was just all the negativity I got I just work twice as hard all the time and it seems like it's done in vain, but I am still here and I believe I'm strong and fierce in a force to be reckoned with! God bless you girl and keep the message loud and proud💕😇😎
I wonder how she’s doing now. It’s such a frustrating disease. I was never a athlete , I can relate though because I had difficulty working. 3 years in for me and still having a tough time.
I was a professional bodybuilder before and going from an amazing body to feeling 80 put me in a crazy mental state. I’m in a better mental state now tho baby steps for us. Hope we heal some day❤
I WAS diagnosed a year ago, it's agony. I'm sorry for your diagnosis. It's emotional, & I don't want anti-depressants and which it makes flare ups worse. So u know. I'm not to uplifting; I apologize God bless you.
I have suffered the effects off Sjogrens for a long time it has been a knock on from my Arthritis which is disappointing, with no cure and little effective medicines you need to take measures of your own to find comfort. If I could say 1 thing don’t wait until it has a decremental effect on your teeth and gums as it will
Now, I know why I feel like I'm suffocating @ times. I've had to sleep with the window cracked my entire life. I've had this most of my life, as a child that cause dry skin and I always had dandruff. Drink water by the gallon. It was until I was about 40 and my dry mouth was so bad I could not carry on a conversation without a glass of water, my eyelids started to peel. My MD asked me if I want to see a psychiatrist. It wasn't until I had bronchitis and was in an Urgent Care, with an older doctor he said I think I know what's wrong I will take these labs and send them to your doctor. Turn then sent me to in ENT. I also have rheumatoid arthritis Osteo arthritis and now they think I have lupus. Thank you for going public!
I had symptoms that the doctors said was acne .Could not sit near flurescent lights .my throat dry and hoarse . took 15 yrs for a locum to suggest I may have lupus . Rheumatology confirmed Lupus and Sjogrens. rheumatoid Arthritis. Never get a night's sleep dry eyes and mouth .prevent that. also have Raynauds .
I read your comment and thought I wrote it. She loves the game. I really like the fact she's putting her pride on the line to keep playing. She still has something ONE MORE PUSH and she can string some good wins together....
Im 24. I was diagnosed at the age of 19 or 20. I got lymphoma from it and now have flare ups. Always tired and dry mouth. I get bronchitis and pain and numbness.
Being recently diagnosed I have to admit its has been the hardest battle of my emotional life . I say this because i have learned to deal with this pain i have learned to drag myself out of bed feeling like i have been beaten with a club joints stiff swollen fingers eyes toes. not to mention its like your going blind sometimes everything is always blurry... Not having Medical Insurance to get proper attention meant several ER visits over the past 4years .Working 50 /60 hrs a week to make rent not eat in my small apartment . I CAN NOT AFFORD TO HAVE THIS DISEASE with all the LUPUS!!!! Traits ugggg !!! it was better just thinking i was getting old.
Whilst you still have some health in your Teeth and gums talk to your dentist. It all good and well for doctors to advise more cleaning and general hygiene in your mouth with sjrogens its the hardest thing to do sometimes even the use of adult toothpaste or mouthwash is excruciating
Yes! I lost all my top teeth and half of my bottom teeth, we just could not figure out why!! Until my dentist mentioned Sjogren's (and I'd heard the name because my GP also had suggested it for other symptoms). I wish I had known sooner, but I will take it as it comes and be grateful for the life I have.
I have primary sjogrens syndrome. After years of being misdiagnosed and told to go here there and everywhere. it's good to see that venus is raising awareness of this because of her I actually persevered and got my diagnosis. Black people are often a erased from these conversations. Even looking at google they are nearly all images of white skin when you look up sjogren's syndrome. It's 2021.
You are a true fighter Venus. I am on your side to assist in whatever way you need and I can help❤🙏... through faith in Jesus Christ this too can be healed...
Go girl very brave 👏 I have sjordrens and it the most awful thing?. Yes, the emotional side is awful because you don't know why you body does not respond, to your prompts, wishing you all the best from South Africa xxxxx rest as well?? Xxxx😊
Spoiler alert! You don't get better, only worse. It's also a precursor for other autoimmune diseases. Lupus, fibromyalgia... My fiance is practically bed ridden now. It's been about 10yrs since she was diagnosed. The past years have been horrible. I wish I could trade places with her. Even for a day... 😢
You know I've had this disease . But my question is the do celebrities get more attention. I jmhave NO choice to leave my job . I have too force myself . Why the glory just for her playing tennis??? I don't have fucking millions I can just say " I'm sick
Hi Kendra Kinard, I am not sure what upset. I would like to say there is no glory for celebrities. Doctors have misdiagnosed Sjogrens for years. Many people do not even suspect they have a serious health problem. When Celebrities speak there is hope that their voices may bring not only more awareness of the disease but also put heat on the medical society to bring about change. I wish you well.
