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Kaleidoscope Fighting Lupus
United States
Приєднався 8 лют 2018
Our mission at Kaleidoscope Fighting Lupus is to EDUCATE the public and to INFORM the medical community about lupus, to ADVOCATE for earlier life-saving diagnosis, to SUPPORT people living with lupus and to COLLABORATE with government and foundations to fund research toward a cure.
Seasonal Challenges of Living with Lupus
As the seasons change, so can your lupus. In particular, the coming of winter cold can wreak havoc on your immune system - increasing the risk of infections or flares and adding to your muscle and joint pain. The challenges of winter weather and even the stress of the holidays can increase lupus symptoms.
Here with a wealth of tips, tricks, and valuable advice to get us through the cold season, is our friend, Dr. Sharon Dowell, clinical rheumatologist and Medical Director of Rheumatology at NEA Baptist Memorial Hospital.
Please, share this important video with everyone you know! It is a valuable resource for all lupus patients, care partners and the physicians who treat them!
Special thanks to our Presenting Sponsor, GSK, for their generous support in making this video!
We also thank our Community Sponsors: Blue-eyed Crow Studio, Tin Rocket, Deux North Studios and 7-Minute Cinemas!
Here with a wealth of tips, tricks, and valuable advice to get us through the cold season, is our friend, Dr. Sharon Dowell, clinical rheumatologist and Medical Director of Rheumatology at NEA Baptist Memorial Hospital.
Please, share this important video with everyone you know! It is a valuable resource for all lupus patients, care partners and the physicians who treat them!
Special thanks to our Presenting Sponsor, GSK, for their generous support in making this video!
We also thank our Community Sponsors: Blue-eyed Crow Studio, Tin Rocket, Deux North Studios and 7-Minute Cinemas!
Переглядів: 140
Відео
Lupus Nephritis and Kidney Disease: A Comprehensive Review
Переглядів 120Місяць тому
Lupus nephritis and kidney damage can be serious conditions affecting over half of those living with lupus, and it common for kidney problems to be the first sign that a person has lupus! Yet, there are very few obvious symptoms to warn these patients ahead of time. So, knowing your risks and what to look for are critical for early detection! In this video, Tiffany Wong, MD, a clinical nephrolo...
Teens and Young Adults with Lupus: Transitioning to Adult Care
Переглядів 51Місяць тому
Moving from pediatric to adult rheumatology care is a critical time for many living with childhood-onset lupus. Many get lost in the transition or even stop treatments altogether - putting their health at serious risk! In this video, Dr. Megan Lockwood, highlights some of the challenges of this transition and how to make the move as successful as possible. Dr. Lockwood is an excellent guide - d...
Lupus and Low-Disease State
Переглядів 391Місяць тому
Complete remission is the goal for anyone living with lupus - at least until we finally find a cure! However, the definition of “remission” keeps changing, and what’s more - for many, a better, more achievable goal is something called a “Lupus Low Disease Activity State.” You may have heard this term when talking to your rheumatologist. Yet, what does it mean to get to a “low disease state?” Ho...
What Does it Mean to Be in a Clinical Trial?
Переглядів 372 місяці тому
In this video, Dr. Megan Lockwood gives a brief overview of lupus - then, she describes what it means to be in a clinical trial, how to decide if a clinical trial is for you, and how to work with your healthcare provider to get the most out one if you join. Presenter: Megan Lockwood, MD is a clinical rheumatologist, the Lupus Program Director at Medstar Georgetown University Hospital, and Assis...
Promotion for "What Does It Mean to Be in a Clinical Trial" with Megan Lockwood, MD.
Переглядів 412 місяці тому
Special thanks to our Presenting Sponsor, Amgen, for their generous support in making this video possible!
Butterflies In My Stomach
Переглядів 1483 місяці тому
The body's microbiome - the natural bacteria of the digestive tract - is one of the most promising areas of research for the causes and possible future treatments of systemic lupus erythematosus! The video includes the latest information and perspectives from experts in the fields of autoimmunity and microbiome research as well as patient education and advocacy. Presenters include: Dr. Teri Gre...
Getting Back on Track: Resuming Your SLE & LN Treatment Plan with Dr Megan Lockwood
Переглядів 1263 місяці тому
There is no shame in falling off of a lupus or lupus nephritis treatment plan! Treatments can be very difficult, and of course, sometimes life just gets in the way. The key is to get back on track … and that takes a plan! In this video, Megan M. Lockwood, MD, a clinical rheumatologist and Director of the Lupus Program at Medstar Georgetown University Hospital, provides a brief overview of lupus...
Lupus and the Need for New Lab Tests
Переглядів 1,1 тис.4 місяці тому
In this video, Dr. Donald Thomas, clinical rheumatologist and author of The Lupus Encyclopedia, describes the need to approve new biomarkers and lab tests to diagnose and treat lupus. Dr. Thomas reviews the history of lupus lab tests, the current status of these tests and why they need to be updated now! Presenter: Don Thomas, MD, clinical rheumatologist with Arthritis & Pain of Prince George’s...
Men Living with Lupus and Lupus Nephritis
Переглядів 5395 місяців тому
Dr. Donald Thomas, clinical rheumatologist and author of The Lupus Encyclopedia, shares his advice and the latest science behind the unique symptoms and challenges of men living with lupus. Topics include: male genetics and lupus, and the risks and treatment of cardiovascular issues and ED. Special thanks to our Presenting Sponsor, GSK, and Program Sponsor, Aurinia Pharmaceuticals, for their ge...
Lupus: Sleep, Rest and Counting Spoons
Переглядів 4346 місяців тому
Can lupus cause insomnia or can insomnia cause lupus? As it turns out, both can be true! Dr. Donald Thomas, clinical rheumatologist and author of The Lupus Encyclopedia, shares his expertise and latest research regarding the complex relationship among lupus, sleep, rest and pacing oneself. He will also describe lupus symptoms such as fatigue and insomnia, and the importance of sleep as part of ...
Discoid Lupus: Diagnosis, Treatment and Thriving!
Переглядів 5 тис.6 місяців тому
Discoid lupus is a form of chronic cutaneous lupus (CCLE) that affects about 20% of those SLE. In this video, Don Thomas, MD, uses his unique perspectives on the myths and facts behind the symptoms of discoid lupus - how it is diagnosed and treated - drawing from his research and personal experience. Presenter: Don Thomas, MD, clinical rheumatologist with Arthritis & Pain of Prince George’s Cou...
CAR T Cell Therapy and Lupus
Переглядів 2,2 тис.7 місяців тому
In this video, Dr. Donald Thomas, clinical rheumatologist and author of The Lupus Encyclopedia, shares the latest science behind this emerging lupus therapy and its promise of drug-free remission. Special thanks to our sponsors Tin Rocket, Blue-eyed Crow Studio, 7-Minute Cinemas and PhRMA for their generous support in making this video possible. Note: Since the video taping (as of April 2024), ...
What is a Biologic?
Переглядів 3178 місяців тому
Biologics are a still relatively new type of medication that hold the promise for targeted, individualized therapies for autoimmune conditions like lupus. They can be life-changing - reducing the need for other medications like corticosteroids and immunosuppressants, which can have challenging side effects. This educational video includes an overview of the science of biologics, providing the b...
An Interview with Dr. Don Thomas, Author of The Lupus Encyclopedia
Переглядів 469Рік тому
Kaleidoscope Fighting Lupus is excited to share with you an exclusive interview with a very good friend, Dr. Don Thomas, a clinical rheumatologist and author of the best-selling book, The Lupus Encyclopedia, which is widely recognized as the gold standard for lupus patients, their caregivers and healthcare professionals. In this interview, Dr. Thomas describes the new 2nd Edition of his book, w...
Primary Care Physicians and Early Diagnosis of Lupus
Переглядів 879Рік тому
Primary Care Physicians and Early Diagnosis of Lupus
Lupus and Women's Health: From Puberty to Menopause
Переглядів 1,4 тис.Рік тому
Lupus and Women's Health: From Puberty to Menopause
Lupus: What Happens to Your Body During a Lupus Flare?
Переглядів 60 тис.Рік тому
Lupus: What Happens to Your Body During a Lupus Flare?
Nefritis Lúpica: Lo Que los Nefrólogos Quiere Que Sepas
Переглядів 523Рік тому
Nefritis Lúpica: Lo Que los Nefrólogos Quiere Que Sepas
Lupus Nephritis: The Road to Diagnosis
Переглядів 5 тис.Рік тому
Lupus Nephritis: The Road to Diagnosis
What Nephrologists Want You to Know About Lupus Nephritis
Переглядів 2,9 тис.2 роки тому
What Nephrologists Want You to Know About Lupus Nephritis
In the Butterfly's Shadow: Caring for Those with Lupus
Переглядів 5352 роки тому
In the Butterfly's Shadow: Caring for Those with Lupus
Know Who's On Your Side: Your Lupus Nephritis Team
Переглядів 3102 роки тому
Know Who's On Your Side: Your Lupus Nephritis Team
Emotional Health, Lupus and Lupus Nephritis: Managing Your Wellbeing
Переглядів 7692 роки тому
Emotional Health, Lupus and Lupus Nephritis: Managing Your Wellbeing
Lupus Nephritis: From Diagnosis to Treatment
Переглядів 9 тис.2 роки тому
Lupus Nephritis: From Diagnosis to Treatment
Entering the Rheum: Preparing for Your Doctor Visit and Beyond
Переглядів 4132 роки тому
Entering the Rheum: Preparing for Your Doctor Visit and Beyond
Lupus and Acupuncture with Dr. Edie Vickers
Переглядів 1,3 тис.3 роки тому
Lupus and Acupuncture with Dr. Edie Vickers
Lupus Nephritis: The Importance of Early Diagnosis
Переглядів 23 тис.3 роки тому
Lupus Nephritis: The Importance of Early Diagnosis
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GOR2I0GSVS2237980&mcm=60003
It's amazing that there's a curative treatment of a chronic disease like lupus
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by using the QR code or following this link: www.usinlupus.com/?cc=prnt_GO...
Today, Dr. Thomas, who is the featured presenter on this video, is undergoing serious open-heart surgery and we ask everyone in the global lupus community to keep him in your hearts and prayers for his health and successful recovery!! Dr. Thomas has been a skilled, energetic and generous advocate for lupus patients everywhere, and we have been honored to work with him for many years now! Here is a link to his Lupus Encyclopedia Facebook where you can find out more from Dr Thomas himself: facebook.com/LupusEncyclopedia
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
Thank you for sharing this valuable info. I hope all rheumatologists share this research about avoiding probiotic supplements with their SLE patients.
Well, I wanna get a fecal microbiome transplant.
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
For some of the best online resources for anyone living with lupus or lupus nephritis, check out GSK’s “Us in Lupus” website by following this link: www.usinlupus.com/?cc=prnt_GO...
Miranda is a walking encyclopedia of physiology. Part of what I enjoy about doing her Classical Stretch workouts is to hear her explain how the body works when it moves. I get to move along with Miranda and attend anatomy class at the same time! 😆
Great talk! How did the anti-SSA antibody patient on cd19 CART benefit from therapy, if they did not have reduction in anti-SSA antibodies? (28min mark)
@lighto999 the immune system is in lupus is much more complicated than one particular antibody. Although anti-SSA can actually lead to inflammation (like insensitivity and fetal heart block), its presence may just be a marker of activity and not necessarily active damage or inflammation. The patient was in drug-free remission the entire time after treatment. However, the question is ... will this person's SLE be more apt to return than in someone whose antibodies all disappear? I suspect it will come back, but we will have to wait and see.
Hi, Great video. Does Dr. Donald have an opinion on CD19 antibodies or CD19 T-cell engagers? I know CD19 CAR-T has most data, but may be restrictive to patients. thx!
My main fear is that B-cell depletors (like anti-CD 19 and anti-CD 20) have led to horrible vaccine response rates and increased deaths from COVID (even recently one of my rituximab patients died of the most recent strain). CD-19 CAR-T patients still respond to vaccines. You are correct, it will not be one size its all. We need to figure out who will respond best to which cellular targets. I foresee this field really exploding quickly over the next few years with more and broader research.
@@DonaldThomasMD Thanks for the reply! Do you have a hypothesis why B-cell depleters (CD19,20) lose vaccine response, while CAR-T does not?
I have a question How does the b cells come back after 90 days if cart cells are still in the system trying to eliminate them
CAR-T programmed cells attach to and kill only cells for which they recognize . More mature B-cells have CD-19 molecules on their surface so they are all destroyed. However, the most immature cells in the bone marrow that can become mature B-cells are still present and they reproduce, repopulating the body with important B-cells to fight off infections. However, so far, they are not producing bad lupus antibodies like anti-dsDNA. That is why the scientists call it "resetting the immune system." However, cells producing anti-SSA are still alive, probably the most mature B-cells called plasma cells, so we have a lot to learn. Also, could the immature cells that do not contain CD-19, could they become abnormal again, producing bad lupus antibodies? Only time will tell as we follow these patients over time.
HI, we asked this question of Dr. Thomas and here is his answer. "The CART T programmed cells attach to and kill only the cells for which they are designed to recognize - the more mature B cells that have CD-19 molecules on their surface. So they are all destroyed. However, the most immature cells in the bone marrow that can become mature B cells later are still present and they reproduce, repopulating the body with important B cells to fight off infections. However, so far, they are not producing bad lupus antibodies like anti-dsDNA. That is why the scientists call it 'resetting the immune system.' However, cells producing anti-SSA are still alive, probably the most mature B-cells called plasma cells [which are not all killed off]. So we have a lot to learn. Also, could the immature cells that do not contain CD-19 become abnormal again, producing bad lupus antibodies? Only time will tell as we follow these patients over time." Thanks for asking this question!
@@kaleidoscopefightinglupus thankyou very much. A very dear person of mine have bad lupus. This can save her
@@shalevsaada7596 Good luck to her!!
Thank you!
Thank you! Share it with anyone else you might think could use this information.
What about RA
Hi, cancer treatments are still the most common use of CAR T cell therapies, but there is some research for RA. You can find out more from the NIH here (scroll down the page): www.ncbi.nlm.nih.gov/pmc/articles/PMC10328598/ We hope this helps! The KFL Team
@@kaleidoscopefightinglupusThank you
There is also a study in RA patients that did well. At the moment, the number of studies and treated patients is really growing... it is an exciting time for possibly better therapies for autoimmune disorders
What a great talk! Thanks!
Thanks for your comments; glad you enjoyed it! Please, share it with everyone you know.
Very informative. Thank you
Since the video taping (as of April 2024), additional data have been published, and at least 43 SLE patients have been reported treated with CAR-T cell therapy. Almost all developed mild, easy-to-treat cytokine release syndrome (most common symptom was fever). Therefore, Dr. Thomas retracts his statement in the video regarding Novartis' CAR-T therapy. Thus far, their results appear to have similar safety and efficacy as other products). Updated report can be seen here: www.lupusencyclopedia.com/car-t-cell-therapy-for-lupus/
Today i noticed hair on my legs and arms completely gone. Scalp ok even thicker than usual. Any comments? f70 +
Hi E! That is not something that we have come across. We hope someone else comments on your inquiry! - KFL
Having lupus and fibromyalgia since I was diagnose at 34 years. I'm 59 years and I'm a level 4 Essentrics Instructor now. I enjoyed your interview with Miranda Esmonde- White explaining Essentrics and how to get out of pain, improve your mobility and a stress relief program helping with Lupus, fibromyalgia, and other conditions. This helped me in a short time but moving slowly, slower pace and gentle exercises. I did stopped all my weight programs and only concentrated on the Essentrics program then I was able to return back to my other activities etc weights and biking . Thanks to Miranda Esmonde-White and Essentrics.
Thank you, Peri for the wonderful comments! It is so encouraging to hear that Essentrics has done so much for your lupus and fibromyalgia!
Great job
i,m forever grateful to a man called DR.Osaka on UA-cam channel who recommended his herbal medicine for me and i got completely cured of Lupus.
All thanks to Dr.Auchi who I met on UA-cam channel. He cure me from Sle Lupus disease with his herbal remedies, I recommend Dr.Auchi on UA-cam channel to everyone suffering from Sle Lupus disease 🦠..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ✅✅✅🙏🙏
Happened to me. Grew it back fully in 2yrs and I started losing it again in May this year 2021 🥀🤷🏻♀️My lupus has been very active indeed *DEEP SIGH*
Put a thumb up before even watching this interview. Have been doing Essentrix workouts for a while now and simply put.....could not do without them !!! Mirranda, thank you from a deepest place of my heart for your wonderful workouts and the kindness and the way you present your teachings.
I am an Asian lupus patient. Thanks for sharing.
Just came down with something like this, this past year. 50% of scalp balding and falling out and trying to come back white but very very thin.
How to be normal or control??
I’m newly diagnosed and this is by far the best information I have come across. It gave me a better understanding of what to expect. Thank you for posting.
Terrific presentation! Suffer from subcutaneous lupus. The sun and/or stress seems to prompt my rashes.
She is amazing❤️
Yes, she is - and spread the word to your friends! Thank you.
I am 73 and my husband is 87 we exercise with Miranda 6 days a week. We love Miranda couldn’t live without her 😊.
Miranda u have taught me so much about the human body & I've been doing your program 7days a week & I'm 75 &feel like 45 thank you
Thank you Joanne, for your wonderful comments. It is so good to hear how well you are doing, and how much Miranda's programs have helped!
It’s shocking how my pain increases all over when I’m more inactive each month during my cycle. More leg, thigh and upper arm pain.
I feel the same way! In some circles, this is called "disuse syndrome" and though it isn't fully understood, it has a bit to do with several of our body systems - sometimes in different parts of the body that seem unrelated. Muscles slightly atrophy with lack of use, our oxygen levels in parts of the body decreases if we don't work our heart, lungs and blood vessels more ... and sometimes our emotional state when inactive can make us feel pain differently. At least there are plenty of resources out there with yoga and other activities that may be of help. We hope you get to feeling better! Thanks for leaving your comment!
Great information to pass along to my fibromyalgia friends.
Thanks, V R, for sharing this with anyone who can be helped!!
💃👑💅