- Видео 75
- Просмотров 45 229
Lupus_Ontario
Канада
Добавлен 17 июл 2020
This is the official account for Lupus Ontario. Lupus Ontario is a team of caring and enthusiastic volunteers and staff who are passionately committed to helping those with lupus live longer and better by raising funds that deliver vital support, education, awareness, and research.
Ballet & Beyond: How Creative Movement & Community Building Empowers People Living with SLE
This insightful webinar explores on how ballet and gentle movement can positively benefit those living with lupus along with an overview of the Dance and Medicine bi-weekly beginner ballet classes with Katie Healey & Emma Neary
Goals of the Webinar
1. Discuss how dance and movement can positively impact individuals with chronic illnesses.
2. Provide an overview of the Dance and Medicine bi-weekly ballet class
Goals of the Webinar
1. Discuss how dance and movement can positively impact individuals with chronic illnesses.
2. Provide an overview of the Dance and Medicine bi-weekly ballet class
Просмотров: 68
Видео
Lupus Ontario Symposium 2024 - CAR T-Cell Therapy and Upcoming Treatments
Просмотров 2083 месяца назад
Presenting you the first session by Dr. Mark Matsos on the topic, CAR T-Cell Therapy and Upcoming Treatments In this session, Dr. Mark Matsos provided an overview of emerging treatments for lupus, with a focus on CAR T-Cell Therapy. He explained the fundamentals of CAR T-Cell Therapy and discussed how this innovative approach could revolutionize the treatment landscape for lupus patients. The s...
Lupus Ontario Symposium 2024 - Biologics Explained
Просмотров 1663 месяца назад
In this session, Dr. Amanda Steiman demystified biologics by explaining what they are and how they function in treating diseases. She highlighted the differences between biologics and other treatment options, detailing how patients should prepare for biologic treatment, including necessary tests, vaccines, and potential side effects. Additionally, Dr. Steiman compared infusion and subcutaneous ...
Lupus Ontario Symposium 2024 - Lupus Types Expanded
Просмотров 1753 месяца назад
Presenting you the second session by Dr. Murray Urowitz on the topic, Lupus Types Expanded In this session, Dr. Murray Urowitz provided a brief recap of Types 1 & 2 lupus, followed by an in-depth exploration of lupus types 3, 4, & beyond. He discussed the implications of these classifications on ongoing lupus patient treatment & provided insights on how patients can effectively advocate for the...
Lupus Ontario Symposium 2024 - EULAR Guideline Revision
Просмотров 2563 месяца назад
Presenting you the first session by Dr. Laura Whittall Garcia on the topic, EULAR Guideline Revisions In this session, Dr. Laura Whittall Garcia delved into the European Alliance of Associations for Rheumatology & its crucial role in setting guidelines for lupus. She discussed the current EULAR guidelines for lupus, recent changes to these guidelines, & the reasons behind these updates. Additio...
Nutrition and Its Impact on Inflammation and Autoimmunity
Просмотров 2943 месяца назад
Topic: Nutrition and Its Impact on Inflammation and Autoimmunity: A Focus on Systemic Lupus Erythematosus (SLE) Objectives This session delves into understanding the connections among diet, inflammation, & immune system function, with special attention to SLE by Dr. Derek Haaland. He examined how these conditions intersect and affect patient health and treatment strategies. Additionally, he wil...
LUPUS-SPECIFIC BIOLOGICS ADVOCACY INITIATIVE
Просмотров 385 месяцев назад
LUPUS-SPECIFIC BIOLOGICS ADVOCACY INITIATIVE
Deciphering the Genetic Complexity of Lupus: Insights and Future Avenues with Dr. Linda Hiraki
Просмотров 1836 месяцев назад
Dr. Linda Hiraki is spearheading a large-scale, international cohort study of systemic lupus erythematosus patients, following them prospectively over the years to understand the genetics of lupus, its diverse manifestations, disease progression, and associated outcomes. Additionally, she is at the forefront of research efforts to uncover rare genetic alterations linked to systemic inflammatory...
Which lupus do you have? Type 1 or type 2 lupus.
Просмотров 21 тыс.9 месяцев назад
Presented by Dr. Murray Urowitz at the Lupus Ontario 2024 AGM.
Lupus Ontario Gala - Online Silent Auction
Просмотров 149 месяцев назад
Did you know? Our Online Silent Auction isn't just about bidding! You can grab tickets to our 50/50 raffle and snag a mystery bag - all in support of Lupus Ontario! Raffle tickets can be purchased until April 6 at 10 PM, while bidding on the Silent Auction and the purchase of Mystery bags are available until April 7th at 7 PM! Get in on the fun at, trellis.org/springsoiree/
Pregnancy in Lupus and Fertility Management
Просмотров 59211 месяцев назад
This session, led by Dr. Carl Laskin, delved into the intricate challenges faced by women with lupus during pregnancy and the effective management of fertility issues. Medication considerations were also addressed in this comprehensive discussion.
L'histoire d'Heidi: Bien vivre avec le lupus
Просмотров 683Год назад
Le #lupus pose des défis uniques à chaque personne touchée par la maladie. En prenant sa santé en main, Heidi est maintenant en mesure de profiter à nouveau de son mode de vie actif.
Heidi's Story - Living well with lupus
Просмотров 1,7 тыс.Год назад
#Lupus poses unique challenges to each person affected by the disease. By advocating for her own health, Heidi is now able to enjoy her active outdoor lifestyle again.
Lupus Ontario Spring Soirée Gala - April 6th 2024
Просмотров 217Год назад
We are excited to announce that the in-person gala is back. Join us on April 6th. 🎟️ Purchase tickets: lupusontario.org/gala-spring-soiree. 📅 March 27 - April 7: Online Silent Auction, Mystery Bag Sales, and 50/50 Raffle. 🌐 Participate at trellis.org/springsoiree. Thank you for supporting Lupus Ontario and our mission to conquer lupus! See you on April 6th!
Lupus Ontario, Supporting research for the past 45 years!
Просмотров 58Год назад
Canada lacks the data and resources to fully understand lupus. Through the Geoff Carr Lupus Research Fellowship, we have made a difference by supporting 30 rheumatologists who have researched this disease and become experts on lupus. Research is a critical tool that can provide answers for those suffering every day. It takes on average 6-7 years to receive a diagnosis, the delay in diagnosis ca...
Unlocking The Power of Biologics - with Dr. Tselios
Просмотров 322Год назад
Unlocking The Power of Biologics - with Dr. Tselios
CARE for All - Interferons' Role in Promoting Lupus Flares by Modifying B Cell Function
Просмотров 151Год назад
CARE for All - Interferons' Role in Promoting Lupus Flares by Modifying B Cell Function
CARE for All - ECHO & ACPAC Programs Transforming Provincial Healthcare & Physician-Patient Dynamic
Просмотров 40Год назад
CARE for All - ECHO & ACPAC Programs Transforming Provincial Healthcare & Physician-Patient Dynamic
CARE for All - SLE Exploring Racial Disparities in the Canadian Context
Просмотров 85Год назад
CARE for All - SLE Exploring Racial Disparities in the Canadian Context
WALK for Lupus Ontario - Top 3 Fundraising Prize Winners 2023
Просмотров 91Год назад
WALK for Lupus Ontario - Top 3 Fundraising Prize Winners 2023
Thunder Bay WALK - Here's what you need to know!
Просмотров 44Год назад
Thunder Bay WALK - Here's what you need to know!
Transition of Care - from Paediatric to Adult
Просмотров 377Год назад
Transition of Care - from Paediatric to Adult
Over 30 Years of the Geoff Carr Fellowship
Просмотров 31Год назад
Over 30 Years of the Geoff Carr Fellowship
Prizes for the Top 3 Fundraisers | WALK for Lupus Ontario 2023
Просмотров 28Год назад
Prizes for the Top 3 Fundraisers | WALK for Lupus Ontario 2023
Does Osteoporosis does it come along with lupus as a follower
Dr. Haaland is a brilliant mind. Wise, knowledgeable, and intuitive - which gives him a greater understanding of his patients.. i always learn something new to help me on my healing journey. He understands you on a human level. You are a gift - a rare physician who undedstands! 🙏. Veey much resonate deeply.on your last statement - dis - ease is holistic, emotions, mental, physically and spiritually!
mine is the skin only one its horrible mine is clear at the moment thank god in my 50s now be horrible next years in my life having kids with this skin one makes me look crazy to other people its my body not theirs
Type three stages lupus
Thank you for the video ! I hope the Rhemotolosgist & the doctors take the time to re-educate themselves on a disease that effects everyone differently!
I have rashes for 4 years. Ana positive and biopsy positive only in skin. I will not go to Ramatolgist. I do not trust Doctors.
I have sle and cutaneous and also lupus profundus
Pls pls what do you use I know I can't go into sun but I'm popping little pimple an my face an then it pops suddenly more now it's around my nose dr gave me prednisone cream nothing helps ever since I got shingles on my back after op on c 4 c5 c6 back was full I didn't feel pain as I was on Morphin Then I had it in my eye then on my hip now on my face
Yes i get this on my face. @fionaestherfortuin4185
Dr Haaland is an amazing person and doctor. I'm thankful my wife has him as her Lupus Dr. He is very knowledgeable on the subject and treatment. Hope you have more webinars with him. I did miss it in Sept but was able to watch it now. Very informative and I got info for myself and my wife. Thank you.
I haven't been diagnosed with Lupus yet but I'm thinking this is what "has me". Thank you for this presentation, Ive found Dr. down to earth and explained things great!
I have SLE. How can i get cart T cell therapy. I am in Canada.
Im type 1 trust me its now causing liver issues,throid issues too
Think mine (type 1) has caused liver, heart & breathing problems.. I only got diagnosed on 19th Dec.. Misdiagnosed in 2015. APS showed up in 2015 at same appt that my speckled ana showed & was not followed up!! So 9 years untreated..has given the above problems..😢
Im type 1 trust me
I have lupus , fibromyalgia at very least
Thank you, the greatest Doctor, for sharing with us!
My take on rheumatologist , some I’ve had don’t know much about what Lupus does. I had one doctor ask me did I know the formulary for the mouthwash that my past doctor in another state used. I asked him how would I know, I’m not a chemist or a doctor that write prescriptions. I left his practice after that, why go into this field care if you don’t know anything about it. He wasn’t the only one like that, I suffer for months with severe mouth lesions. So over having this disease…period and the doctors. Have anyone been diagnosed with Sero Negative RA ? It’s No joke….it’s so painful burning and freezing…all at once…brain fog… and extreme fatigue.
My take on rheumatologist , some I’ve had don’t know much about what Lupus does. I had one doctor ask me did I know the formulary for the mouthwash that my past doctor in another state used. I asked him how would I know, I’m not a chemist or a doctor that write prescriptions. I left his practice after that, why go into this field care if you don’t know anything about it. He wasn’t the only one like that, I suffer for months with severe mouth lesions. So over having this disease…period and the doctors.
I've been there as well. Went to see a doctor with my lower right leg swollen , painful & hard as a rock. The doctor told me I needed a knee implant. The next day I wind up in the ER with 2 DVT in my right leg !
Hello Ontario 👋 from Indiana. I’m sure I have both types I have also developed mesenteric vasculitis and brain aneurysm. I am very blessed to still be here even if in diminished condition. Can you tell me what is the gold standard care for this In Ontario or Canada? Thank you.
Hello Ontario 👋 from Indiana. I’m sure I have both types I have also developed mesenteric vasculitis and brain aneurysm. I am very blessed to still be here even if in diminished condition. Can you tell me what is the gold standard care for this In Ontario or Canada? Thank you.
There also needs to be more awareness and diagnosis in men of all races. Just listening to this lecture shows how man get forgotten about with this disease. I’m a white male 40 with the disease
Waste of time going to the drs. They cannot give you definitive answers. Even my blood test was negative
I have a BIG question. So I've been diagnosed with Lupus SLE since I was 19. I'm 49. That being stated in the last several years, I have grown 6 masses of unknown origin. Two are in the brain. One is in the sinus cavity. Two are in the right breast. One is in the left breast. No biopsies have been done on ANY of them, and everybody keeps saying "Well, we think they're okay. My grandmother had Scolderma for added context. Is there ANY known conditions associated with Lupus that would involve growing masses?"
Isn't it awesome to test positive for ANA, ssDNA, and others, all the symptoms and the nurse says you probably don't have autoimmune disease. 🙄
I tested positive for ANA, high anti-dsdna, plus a multitude of symptoms and rheumatologist said it’s “fibromyalgia.”
I have a PALS complaint raised. Was told i dont have MCTD before blood results received..by trainee.. just by looking at me. Now the senior Rheumatologist is offering to see me. She emailed and said i have Lupus ( 1)..
I also have APS & hEDS. Sounds pretty much MCTD to me!
How to treat type 2, pls..
What about lupus that presents with chronic angioedema and urticaria???
Type 2 requires more of the doctor to be liable for once you report it Pain : controversies Fatigue: off label If u can’t do a job you can’t be a homemaker It gets to the point your nothing to no one
Very informative for lupus community!
How is Type 2 treated?
I have all type 1 lupus, but ANA and biopy skin and muscle were negative
Thanks for this presentation. Very informative in my understanding of the disease. So much to learn in own disease management both now and ultimately in the future - feel like I’ll never know enough or full picture of disease. Knowledge is definitely empowering when this disease and its unpredictable associates can remove the ‘good health’ we once took for granted.
I have secondary sjogren's syndrome I'm almost positive I have Lupus type 2. I don't know if my rheumatologist is aware of it I will show him your video and maybe he'll learn something
Doctor, please answer my question. Is Drug Induced Lupus a type 1 or 2? How many drugs are known to induce Lupus, at this time? 63 F with RA x 30yr. Also, Hashi, Sjodren's, Cushing's, Lupus and who knows what else.
Mixed 😢
"Type 2" is much like "B" lymphoma symptoms.
I completed a full formal neuropsych eval after a non dominant hemorrhage and my "goofiness" post. I have been unable to find out exactly what i was or was not doing. My SLUMS was like 22 or 24. I am assuming I was off the fentanyl and any benzodiazepine long enough that it should not have been interfering. During Cognitive therapy post, I mentioned concern since much younger re possible ADD-Inattentive. The neuropsych was consistent with ADD but the neuropsychologist mentioned that the Executive Function issues are noted with Lupus as well. Unfortunately I am not certain I can understand how SLE activity interferes with neuronal function or possibly neurotransmitter specific. (I do have some improvement with atomoxetine which acts more at NE synapses (and presumably where amphetamines also work.) Pred helps too, and together ... But I still cant figure out hoe pred makes a difference. Since I have Rufus, I'm not certain how much MSK issues are RA v SLE.
Everyone says get help asap….how do you do that when seeing a doctor, your appointment is over a year away? I just don’t understand….
Wow! Why do you have to wait a year? That’s awful!
Wait for the appointment... Then don't miss it when the appointment comes.. if it becomes urgent, go to ER.. then you'll see someone fast.. I'm not a medical doctor but patients get upset with doctors for waiting so long for appointments.. i always remind myself the world doesn't revolve around me, I'm not the main character, and there are many many people going through the same. There are thousands of us and few of them, we must be patient when we can.
A year to wait is unacceptable! Please keep trying to get in, perhaps there will be cancelations! Best wishes to you!
I have lupus rheumatoid arthritis and fibromyalgia. I don’t like to bring fibromyalgia up with my dr. I can see her getting upset then I have to deal with everything is fibromyalgia. It is sad that rheumatology only like to see red hot joint.
Very informative. Thank you. My Gran passed at 61 undiagnosed from SLE. my mom passed last year after 64th birthday undiagnosed both SLE and Ms as well as diagnosed Hereditary Alpha Tryptasemia. The Uni Coroner said we all need to be tested. My ana was negative in fall, but dealing with alot aches and fatigue lately when im very energetic and want to be retested at the Uni. I felt i was dismissed at the Rheumatologist. Is it too early stage for positive results or im not as severe as them (at 45yrs old)?
I'm not a doctor. But you need to be a severe flare for some antibodies tests to show up as positive. I've suffered undiagnosed for so long (similar age) and let me tell you, pain is not normal. I knew before I was diagnosed whilst still under investigation. When confirmed I thought I was prepared. But nothing really prepares you. Wishing you luck, I hope its not lupus though x its awful x
I just got diagnosed, had mostly minor symptoms for 10-15 years and negative tests, suddenly had a flare and dsdna extremely high, so probably yah- you have to meet enough criteria. Also drs want to see the numbers
I have SLE I dont even waist my time with Rhemo people. They do nothing for me.
True
I was just diagnosed “likely to have lupus but need to see a rheumatologist” and I’m not sure what type I have until I do because my nurse/doctor doesn’t know. Just curious, may your explain what you mean by this comment and what rhemo people means if you don’t mind? I’m debating on going to a rheumatologist or not because I have little to no faith in the medical system at the moment. Apologies for the rant, just trying to get some answers 🙏🏼
Me too! Done alk treatments & drugs. Nothing has helped. I am American Indian and we don’t do well with the meds/treatments.
@@rosebudadkins6803Have you tried spiritual remedies?
@@Chrysalis616establish a relationship with a rheumatologist, the likey hood you will need them at some point in high. It may not hit you often and al ays but if could knock you out for weeks at a time.. or you can be suffering unnecessarily.
Many general practioners and Rheumatologist don't discuss type 2
That is true, and it is so important!
They can't & don't understand it !
17:53 How to talk to your doctor. Exceptional information
I so wish I have doctors that could help me. I have been suffering for so long.
You need to keep looking. They are out there. Reach out to Lupus Ontario for my contact information. Heidi
Please keep up the wonderful work! I'm at wits with my lupus! You guys have taught me more than anyone❤️
Plaquenil makes me feel worse!
Thank you! Lupus is hard to understand and what medicine to take?
Angella Evans
🤪 Promo_SM
I have lupus and I no Dr. 😭😭😭
You helped a young man with autism, Chris, live his life with such better quality. Thank you from a grateful caregiver who saw some remarkable results due to your attentiveness, patients and knowledge. You will be missed by many but it is now time for yourself, so enjoy your well deserved retirement. Best wishes and stay well!
Thank you so much,i need this information a lot,i hope you helping like me suffering in lupus like financial assistance to buy my medicine,,thank you ❤❤❤
It's very hard to deal with lupus, we go through a lot of different symptoms we don't know what to do, some of the medication don't work, and then when you take the medication the nasty side-effects that comes with it,, who want to feel this way... then we become so l depressed.. we need better help. My head feel like a burning tingling sensation , can anyone relate plz..
It can be quite a difficult journey, both physically and mentally. Joining a lupus support group may help, it may help to talk to others who are going through lupus. You can visit lupusontario.org/support to register for any of the free online support groups.
I just stay on a healthy vegan diet and avoid as much man-made pharmaceuticals as I can . I want the healthiest diet possible . I got through covid with no vaccination as none were available . I enjoy chai. And 😎 .I notice a lot less arthritis... ❤
@@lupus_ontariohow long do brain fog last if it's ur first time feeling like that
@@Theselbyfamily Only a doctor can provide medical advice, and each person's experience with brain fog is quite unique. It may help to join one of our support groups and discuss this with others with lupus. You can register for the free online support group at lupusontario.org/support/