Massage can , relief the pain in joints and drink a lot of water as much as possible stay away from carbs and sweets . and most of all read your Bible listen to a gospel music and accept Jesus Christ as your Lord and SAVIOUR and you are ok . God bless you all 🙏❤️
It's awesome to have a "face"behind this disease. People rarely know about Sjogren's. I had a virtual appt with my rheumatologist last week and what we talked about was what a bad headache she had I live in Ft Myers FL. It's the about the size of Tampa but seems like we're behind everything about 20 yrs. It's a struggle but all we can do is look forward. Thank you so much, Ms Williams, for lending your voice to this terrible illness.
Hi Venus, 37 male from Sweden, had same symtoms as you, and now i will do my final tests. Everything seems to be sjögrens. And as a sports athlete , i can understand you. Just want to say i am impressed about your mentality to deal with this. And thanks for your tips about your diet in other videos. Will try it for sure, and hope that i can start with my sports again. Have a great day!😊
Venus, I was diagnosed with Sarcoidosis this year, which is an immune disfunction disease. I have pulmonary sarcoid. And, I was a competitive dancer and teacher and had to stop this year. I wasn’t sure if I could ever get back to where I was then heard about you competing in Singles again in Washington DC, I live outside DC. You coming back to the court in Singles is such an inspiration! Show Sjogren’s who is the boss! I’m so excited for you. You don’t have to win… you just have to play! Thank you for everything you are doing to educate and inspire! ❤️❤️❤️❤️❤️
Thank you for your encouragement. I was diagnosed 3 days ago. Now I can understand why I’ve been feeling the way I have. Your videos are very informative and helpful. You’re very fortunate to have friends and family that understand you. I feel like I’m alone sometimes…
Thank you so much, Venus, for your uplifting words. I too suffer from a debilitating autoimmune disease (myalgic encephalomyelitis) that keeps me bed bound for most of the time. I used to play tennis, but can't anymore. I have always loved watching you and your sister on the court. You are both such major inspirations - but particularly you in terms of how you manage your disease. Many greetings from Copenhagen, Denmark ❤🙏❤
I appreciate your advocacy but I have to say that Sjogrens disease is a LOT more than usually gets shared. When I google or search UA-cam it’s unfortunate that the focus is mostly on dry eyes and mouth when there is so much more. I was diagnosed 3 years ago and had to leave my dream job because of it. I’m part of an online community and support group of those with the disease and the symptoms are soooo much more- hair loss, tooth decay and gum disease, joint pain, chronic fatigue, memory and brain fog, liver damage, heart issues, urinary issues, neurological issues, lymphomas, rash and swelling, etc… . I find this disease is still widely misunderstood and we need more info out there. Please use your voice to help us who don’t.
Thank you Venus. I have just been diagnosed with Sjogren's. I am finding it very hard to deal with. I get no sympathy from anyone as no one knows about Sjogren's. I have Lupis on top of this. I am very depressed. I feel very much that I cannot handle it.
Feeling compassion for you. It’s genuinely very hard. Although only diagnosed 18 years ago, I am sure I’ve had symptoms longer. Also, I was only 32 when it started. 35 when diagnosed , which is now believed to be correlated with greater severity. This has proved true for me. I encourage you to pursue further contact with Sjogren’s Foundation or similar in order to be in contact with others who “get it”. Secondarily, maybe, in time, will help you on your better days, to learn how to educate those for whom you really care there is greater understanding. But start with contact with those who you do not feel that you have to explain “everything”. Find a caring support group. Otherwise the isolation is undermining to our stability. Knowing you are not alone does help.
Hey your not alone ... even males like me are also victim of this damn disease ... you r right- no one will understand us or no one can relate the pain and agony tat we are going tru ... we r cursed by god and me now an atheist bcs life is that much hell ... and most funny thing is it’s runs in family so may be ur parents may had or have this and now your kids too will get this ... what a fate we have ..
@barbara hingley I do was diagnosed w/sjogrens last yr besides osteoarthritis. Never had health problems before til now @ 63yrs old. At first I didn't except it, but realized I'm not young anymore. So I have to except it and try to make it possible to deal with it and enjoy life while I can. So, you're not alone. Hang in there and try your best 🙏🙏🙏
Needed this! 🙌🏻🙏🏻💛 Thank you, Venus and hoping you will always feel more or less on top of this disease. I remember you mentioning medication in an interview. May I ask if you took Plaquenil and if that helped with your symptoms? I’ve been contemplating trying it.
Isome of us find it iDEBILITATING so I have always avoided mentioning that a world-class athlete has Sjögren’s. I question if this representation and statements such as “you can conquer (overcome?) this disease” (something like that at the end) imply that someone like me whose physical and cognitive abilities have been greatly diminished and who has been forced by symptoms of Primary Sjogren’s Syndrome to medically retire. I cannot reconcile how to view this. I really hope that the Sjogren’s Foundation can help Ms Williams form a more balanced message to represent all patients, even the 1/3 who have a severe presentation. (As Dr Carson said in the Annual Conference today, there is work being done to stratify patients due to large differences in symptom severity.) PLEASE.
Does anyone have way to deal with the damaging acid erosion it makes on the enamel of teeth. Its so hard to find anything about this. My teeth feel like sandpaper in the middle of the night, stick to my tissues and my tongue is like the desert. Any recommendations would be greatly appreciated. I rinse with baking soda water which helps somewhat. I brush with an enamel restoring toothpaste and floss twice a day. But this disease is destroying my teeth.
@@cathyflowers8936 I'm hearing Liver is really good because of the amount of vitamins and minerals. But a lot of people don't like it.. I do so I'm starting to eat it more.. before was every blue moon
It’s. Terrible disease so painful and there’s nothing they can do or don’t want to do you must help yourself because these doctors don’t know what to do
Thank you Ms Williams for your voice. I suffer from it for almost 10 years and nobody really understands it - even Doctors.
Massage can , relief the pain in joints and drink a lot of water as much as possible stay away from carbs and sweets . and most of all read your Bible listen to a gospel music and accept Jesus Christ as your Lord and SAVIOUR and you are ok . God bless you all 🙏❤️
I agree.
It's awesome to have a "face"behind this disease. People rarely know about Sjogren's.
I had a virtual appt with my rheumatologist last week and what we talked about was what a bad headache she had
I live in Ft Myers FL. It's the about the size of Tampa but seems like we're behind everything about 20 yrs.
It's a struggle but all we can do is look forward. Thank you so much, Ms Williams, for lending your voice to this terrible illness.
Hi Venus, 37 male from Sweden, had same symtoms as you, and now i will do my final tests. Everything seems to be sjögrens. And as a sports athlete , i can understand you. Just want to say i am impressed about your mentality to deal with this. And thanks for your tips about your diet in other videos. Will try it for sure, and hope that i can start with my sports again. Have a great day!😊
I suffer from Sjogren's Syndrome, thank you for doing this Venus Williams!
Thank you for doing this Venus Williams! I was feeling down as I was recently diagnosed with this issue but I am now feeling motivated!
Venus, I was diagnosed with Sarcoidosis this year, which is an immune disfunction disease. I have pulmonary sarcoid. And, I was a competitive dancer and teacher and had to stop this year. I wasn’t sure if I could ever get back to where I was then heard about you competing in Singles again in Washington DC, I live outside DC.
You coming back to the court in Singles is such an inspiration! Show Sjogren’s who is the boss! I’m so excited for you. You don’t have to win… you just have to play! Thank you for everything you are doing to educate and inspire! ❤️❤️❤️❤️❤️
Thank you for your encouragement. I was diagnosed 3 days ago. Now I can understand why I’ve been feeling the way I have. Your videos are very informative and helpful.
You’re very fortunate to have friends and family that understand you. I feel like I’m alone sometimes…
Aww. I encourage you to connect with online support. It helps to chat with others who “get” it.
Thank you so much, Venus, for your uplifting words. I too suffer from a debilitating autoimmune disease (myalgic encephalomyelitis) that keeps me bed bound for most of the time. I used to play tennis, but can't anymore. I have always loved watching you and your sister on the court. You are both such major inspirations - but particularly you in terms of how you manage your disease. Many greetings from Copenhagen, Denmark ❤🙏❤
Thank you!!! Not many people know about Sjogrens. I have been diagnosed 5 yrs ago and its been tough. Thanks again
I appreciate your advocacy but I have to say that Sjogrens disease is a LOT more than usually gets shared. When I google or search UA-cam it’s unfortunate that the focus is mostly on dry eyes and mouth when there is so much more. I was diagnosed 3 years ago and had to leave my dream job because of it. I’m part of an online community and support group of those with the disease and the symptoms are soooo much more- hair loss, tooth decay and gum disease, joint pain, chronic fatigue, memory and brain fog, liver damage, heart issues, urinary issues, neurological issues, lymphomas, rash and swelling, etc… . I find this disease is still widely misunderstood and we need more info out there. Please use your voice to help us who don’t.
Thank you Venus. I have just been diagnosed with Sjogren's. I am finding it very hard to deal with. I get no sympathy from anyone as no one knows about Sjogren's. I have Lupis on top of this. I am very depressed. I feel very much that I cannot handle it.
Feeling compassion for you. It’s genuinely very hard. Although only diagnosed 18 years ago, I am sure I’ve had symptoms longer. Also, I was only 32 when it started. 35 when diagnosed , which is now believed to be correlated with greater severity. This has proved true for me.
I encourage you to pursue further contact with Sjogren’s Foundation or similar in order to be in contact with others who “get it”. Secondarily, maybe, in time, will help you on your better days, to learn how to educate those for whom you really care there is greater understanding. But start with contact with those who you do not feel that you have to explain “everything”. Find a caring support group. Otherwise the isolation is undermining to our stability. Knowing you are not alone does help.
Hey your not alone ... even males like me are also victim of this damn disease ... you r right- no one will understand us or no one can relate the pain and agony tat we are going tru ... we r cursed by god and me now an atheist bcs life is that much hell ... and most funny thing is it’s runs in family so may be ur parents may had or have this and now your kids too will get this ... what a fate we have ..
@barbara hingley I do was diagnosed w/sjogrens last yr besides osteoarthritis. Never had health problems before til now @ 63yrs old. At first I didn't except it, but realized I'm not young anymore. So I have to except it and try to make it possible to deal with it and enjoy life while I can. So, you're not alone. Hang in there and try your best 🙏🙏🙏
I ❤️ you Venus. You have a fighting spirit. Keep it up!
Needed this! 🙌🏻🙏🏻💛 Thank you, Venus and hoping you will always feel more or less on top of this disease.
I remember you mentioning medication in an interview. May I ask if you took Plaquenil and if that helped with your symptoms? I’ve been contemplating trying it.
Isome of us find it iDEBILITATING
so I have always avoided mentioning that a world-class athlete has Sjögren’s. I question if this representation and statements such as “you can conquer (overcome?) this disease” (something like that at the end) imply that someone like me whose physical and cognitive abilities have been greatly diminished and who has been forced by symptoms of Primary Sjogren’s Syndrome to medically retire. I cannot reconcile how to view this.
I really hope that the Sjogren’s Foundation can help Ms Williams form a more balanced message to represent all patients, even the 1/3 who have a severe presentation. (As Dr Carson said in the Annual Conference today, there is work being done to stratify patients due to large differences in symptom severity.)
PLEASE.
Does anyone have way to deal with the damaging acid erosion it makes on the enamel of teeth. Its so hard to find anything about this. My teeth feel like sandpaper in the middle of the night, stick to my tissues and my tongue is like the desert. Any recommendations would be greatly appreciated. I rinse with baking soda water which helps somewhat. I brush with an enamel restoring toothpaste and floss twice a day. But this disease is destroying my teeth.
Thank you for this video.
What do you do for brain fog.. its debilitating and hard to focus in reality
No what you mean ,seems to come up more often than normal ,as I am getting older ,any ideas ????
@@cathyflowers8936 I'm hearing Liver is really good because of the amount of vitamins and minerals. But a lot of people don't like it.. I do so I'm starting to eat it more.. before was every blue moon
It’s. Terrible disease so painful and there’s nothing they can do or don’t want to do you must help yourself because these doctors don’t know what to do
She still gasp while talking ... it’s a damn disease that makes life hell. Any medicines available for this disease ?
😉