Unite Our Global Community
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Жыл бұрын
Rare Disease Day 2016
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8 жыл бұрын
IPPF Patient Educators in Action
2:47
#healourskin
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9 жыл бұрын
IPPF Put It On Your Radar
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9 жыл бұрын
Пікірлер
@BDkohli-pt3bo
@BDkohli-pt3bo Күн бұрын
God bless you thank for my dear lovely satguru tera hi aasra ji lakh lakh shukhrana Maharaj ji ka dhan kirpaal ji
@rosie5065
@rosie5065 11 күн бұрын
I’ve had pemphigus in my mouth since age 15 and started with it on my skin age 70. Now waiting for skin biopsy to confirm diagnosis. Most drs are totally ignorant about pemphigus
@jeffreydeuitch2146
@jeffreydeuitch2146 2 ай бұрын
Can you identify some of the biosimilars and desc ribe drug action and give some historic pricing? Many thanks. Jeff in Florida
@janicea.4395
@janicea.4395 7 ай бұрын
Excellent Information! My 88 y/o Mother was diagnosed with Pemphigus Vulgaris 2 months ago. We experienced exactly what the Doctor said that it took us months to get a diagnosis. It started in her mouth and then it went to her skin across her chest and on top of one shoulder. She has received two Rituximab infusions.
@bharatkhatke6541
@bharatkhatke6541 8 ай бұрын
Mam I hav all ready August 2021 4 dos rituximab 2 yer qur may disiz carnt may problem sat Nov 2023 carant 4 dos rituximab
@davidgarrison6936
@davidgarrison6936 10 ай бұрын
My Dermatologist prescribed DUPLIXENT? Denied by insurance company. She rewrote claim for different issue...DENIED. I've had 6 sample injections but not enough for determination of effectiveness. I may ask about RETUXIN? THANK YOU. lonely disease 😢
@iracemamccann111
@iracemamccann111 11 ай бұрын
Thank you for sharing your story .. I believe mine began in 2015 .. but I was not diagnosed on paper til 2020 .. yet I was seen by an incredible Dr at NW Medicine in Chicago .. then she left the institution and state . Then the delays began . I continue to struggle but have faith that the process will improve . So thank you 🙏🏼
@elainebrass151
@elainebrass151 11 ай бұрын
I'm a sixty-eight female and I've had bullous pemphigoid(B.P.) since early childhood. As I've aged B.P. fare ups are often. Once the B.P. blisters bust i have second degree burns in various parts of my body. I'm interested in the studies. B.P. sufferer
@sujit.tyson0147
@sujit.tyson0147 Жыл бұрын
Sir This diseases how to relief..
@hybridhelix88
@hybridhelix88 Жыл бұрын
I am wondering about two things: 1. How could EVERYONE not think of an autoimmunedisease? Blisters -> Check antibodies especially with female patients. Pemphigus vulgaris, Epidermolysis, etc is part of the curriculum even when I was still studying. 2. Its really amazing that it became worse over time but was limited to her mouth only. That means it was fully IgG1 on DSG-3 onl, without any antobodies against DSG-1 at all (except of her pallatum durum was also affected)
@sujit.tyson0147
@sujit.tyson0147 Жыл бұрын
Give me suggestion please in my wife have
@towardsbettergolf4100
@towardsbettergolf4100 Жыл бұрын
A great overview of the condition. I have suffered the same recently, mouth, eye and under arm blisters. Need a biopsy asap. Thank you!
@DrEduardoBeltran
@DrEduardoBeltran Жыл бұрын
kzbin.info/www/bejne/jp2nf3mMhsyNec0
@komalawale9620
@komalawale9620 Жыл бұрын
I am also suffering from this diagnosis pl help me
@maricris653
@maricris653 Жыл бұрын
Thank you so much for this info. I, too suffered same symptoms and currently confined in the hospital awaiting for pathology report. This info you shared will and can assist those who suffer from this very painful disease. I will post additional information once I get my complete diagnosis.❤️
@DrEduardoBeltran
@DrEduardoBeltran Жыл бұрын
kzbin.info/www/bejne/jp2nf3mMhsyNec0
@debhorapedroza1705
@debhorapedroza1705 Жыл бұрын
Does it cause memory loss
@SureshKumar-gu4mj
@SureshKumar-gu4mj Жыл бұрын
IPPF fraud group
@SureshKumar-gu4mj
@SureshKumar-gu4mj Жыл бұрын
IPPF fraud group😡😡😡
@NavidNegahban-sd8jx
@NavidNegahban-sd8jx Жыл бұрын
I love how Dr Oseghale Sunday use herbs to cure people, I was cured from herpes virus the first day I used the herbs and soap the med is magnificent!
@deliciaortega3513
@deliciaortega3513 Жыл бұрын
I keep rejoicing ever since I used Dr Erayo herbal remedies on KZbin to permanently eradicate my herpes virus. You’re indeed a great healer. 🧡🧡🧡🧡🧡🧡🧡
@deliciaortega3513
@deliciaortega3513 Жыл бұрын
I keep rejoicing ever since I used Dr Erayo herbal remedies on KZbin to permanently eradicate my herpes virus. You’re indeed a great healer. 🧡🧡🧡🧡🧡🧡🧡
@doreentrazius3368
@doreentrazius3368 Жыл бұрын
My soul purpose is to help save lives, so contact Dr Ogudugu right away and get your herpes permanent cure from him.
@areeskinwar7274
@areeskinwar7274 Жыл бұрын
3 days water fast, no food what so ever, 5 gallons a day, a glass every half hour around the clock. (Ionize water or distilled).......I was on 21 prenasone per day plus other meds and the meds damaged most of my organs, I went of off all meds to die, I lived in my bed for 3 days rolling around in my skin and blood, I decide to do the fast. Medical doctors can never help anything unless it's surgery, stay away from non organic veggies, purple and orange veggies, pepper, gluten, red meat, sugar.....and most of all visualize your body healing from the inside out.
@heartcompass369
@heartcompass369 Жыл бұрын
this video combined with this one helped me understand much more of how to help my family member - kzbin.info/www/bejne/rIWZdpaGrKt5p80
@alilawoffice
@alilawoffice Жыл бұрын
Pls guide us
@alilawoffice
@alilawoffice Жыл бұрын
We have a patient almost 5/6 years old
@alilawoffice
@alilawoffice Жыл бұрын
Hi
@LisaT3DS
@LisaT3DS Жыл бұрын
Too much blah, blah, blah and nothing new; we all know already how our insurance plans work! I expected info on drugs.
@gloriaraspberry1266
@gloriaraspberry1266 Жыл бұрын
Thank you so much uchfor your video. I thought what is on my neck was just a cyst. It originally popped like a cyst but now it looks like I have two eyes in the side of my neck. Because of your video I'm gonna stop self medicating and head to the emergency room. Thank you for your courage. I'll try to keep you posted. Thank you.
@ore6582
@ore6582 Жыл бұрын
Thank you a lot! I'm a medical student and learning on this subject recently . This video really helps me figure out the signs and symptoms of Pemphigus, and how much suffer that a real patient has to cope with. Besides, I can know the long journey to get the correct diagnosis.
@DrEduardoBeltran
@DrEduardoBeltran Жыл бұрын
kzbin.info/www/bejne/jp2nf3mMhsyNec0
@kirtigupta3879
@kirtigupta3879 Жыл бұрын
I had suffered this autoimmune disease almost 4 years ,2015~2019.. it was almost life changing experience for me .. but god grace now I’m normal n absolutely fine .. patient Kirti Gupta from India .. thank you doctors
@shaniyasyed8517
@shaniyasyed8517 Жыл бұрын
Hello ma'am.. my husband have this problem now .. can you please share consequences nd after effects of taking medicines r you go with injection treatment.. pls share It will be very helpful to us
@KarthiAnandSena
@KarthiAnandSena 2 жыл бұрын
Is this still active
@mygarage..736
@mygarage..736 2 жыл бұрын
i have pemphigus vulgaris...plz help me
@vasusoni1572
@vasusoni1572 2 жыл бұрын
Plss i want to talk for phemphigus valguris my mother is suffering from this diseace pls suggest plss give contact or addrrss or contact number ..
@laurajakovi9346
@laurajakovi9346 2 жыл бұрын
My sister has this disease and she refused to go on cellcept or Prednisone. She found a great med called Retuxin or Retuxibob. See if you could get that med.
@debbiedobrzenski8497
@debbiedobrzenski8497 2 жыл бұрын
Have been dealing with what seems to be what you’re experiencing. Start for me at 53 . I’ve been battling this to date since 2010 . 8 dermatologists, 1 infectious disease drs. These lesions, I refer to them, all bleed , once it reaches a horrible inflamed condition bleed out and a slit as if you cut it open appears . These sores first appeared on face along neckline, chest, now arms legs , stomach. I don’t know how much more I can stand ! Going out is a chore just making them less noticeable lighter , not for long! ! I had a flare of some bacterial thing going on with dental that the dentist couldn’t understand what was going on ! I’m at wits end lot of years dealing with this , WHY ? Drs WHY ? Thanks for sharing your experience .
@rekhakumari5017
@rekhakumari5017 2 жыл бұрын
After completing the both doses of rituximab my mom is fine now.But her oral problems still yet . She can't eat spicy food...... Please give me suggestion 😟🙏
@jamilamusse5616
@jamilamusse5616 2 жыл бұрын
Thank you Becky for sharing this I went through some things 2008 to 2009 finally they found me pemphigus vulgaris I still take 5ml prednisone I also became diabetic
@shasho4624
@shasho4624 Жыл бұрын
Is Prednisone the reason you became diabetic?
@nabidsarwar2805
@nabidsarwar2805 2 жыл бұрын
My wife has pemphigus Vulgaris from 2005. And she is suffering alot. This really hurts to see her cry. I married her 2 years ago. Doctors in our country failed to give proper medication. I can't see her to cry more. What should I need to do. Is there anyone who can help me with a medication which may cure her from this. Help me please. 🥺🥺🥺
@ambala1981
@ambala1981 Жыл бұрын
Give her rituximab if situation is bad...2 8nfusuon of 1000mg 15 days apart...then on oral therapy if needed... 4-6 infusions can me needed for svere cases.
@bonnieparrett696
@bonnieparrett696 2 жыл бұрын
I was finally dx with MMP several years ago after 12 years of symptoms. Wearing a mask increases my mouth & nose symptoms, probably due to the heat on my face under the mask. I have been refused medical care because I have to refuse the mask. Few medical people understand the condition.
@bonnieparrett696
@bonnieparrett696 2 жыл бұрын
Do you see MMP in the groin area...what is the treatment? What type of medical person is best to be seen?
@suryakantkhilar1507
@suryakantkhilar1507 2 жыл бұрын
am a final year medical student from India and my mother herself is going through this disease. At first her disease was diagnosed as oral lichen planus, but as blisters started appearing, soon on 2nd visit the oral medicine dr diagnosed her to be a case of oral pemphigus vulgaris. Praying that all the people struggling with this disease get well soon and live a painless life as much as possible. God bless all.
@loubnaaz1556
@loubnaaz1556 2 жыл бұрын
I am just diagnostic with pemphigus vulgaris. I heard that there's a good treatment for it in India .please tell me about it .
@suryakantkhilar1507
@suryakantkhilar1507 2 жыл бұрын
@@loubnaaz1556 here, most people i have seen or talked with have the disease in control either through steroids or immunomodulators.Some use traditional Indian medicines and adhere to strict diet plans and get the disease in control, but i dont know anyone who has been cured from it. If i come across any source as i am searching for my mother too, i will inform you.
@loubnaaz1556
@loubnaaz1556 2 жыл бұрын
@@suryakantkhilar1507 ok bro thank u God bless all
@bajranglal6080
@bajranglal6080 Жыл бұрын
Sir meri beti ko ye pemphigus vulgaris h koi treatment batay pls🙏
@bajranglal6080
@bajranglal6080 Жыл бұрын
@@suryakantkhilar1507 sir meri beti ko pemphigus vulgaris h koi treatment batay pls
@vasusoni1572
@vasusoni1572 2 жыл бұрын
pls provide some medicin for pumphius valgurs in mouth my mom is suffering from this desease .. pls provide some medicin for us and treatment
@rekhakumari5017
@rekhakumari5017 2 жыл бұрын
Where are u from..... Can u visit Ranchi Gandhinagar hospital of Dr. Kumar Ajay singh My mother is also treating with his observation She is better now
@vasusoni1572
@vasusoni1572 2 жыл бұрын
@@rekhakumari5017 plss can u privide ur contact detail so tht my mother will contact u
@vasusoni1572
@vasusoni1572 2 жыл бұрын
@@rekhakumari5017 can u provide plss ur mobil no so tht my mother will consult u clearly pliss 🙏
@DrSmitaChakote
@DrSmitaChakote 2 жыл бұрын
Inspiring
@DrSmitaChakote
@DrSmitaChakote 2 жыл бұрын
kzbin.info/aero/PLl2w7aBGnkkUbN9FItP_CsESe0xmwt0EK
@DrSmitaChakote
@DrSmitaChakote 2 жыл бұрын
kzbin.info/aero/PLl2w7aBGnkkUbN9FItP_CsESe0xmwt0EK
@rekhakumari5017
@rekhakumari5017 3 жыл бұрын
My mother is also affected with pemhigus valguris about 2 years ago Her symptoms is under control but she faces many problems
@erumsaleem9700
@erumsaleem9700 2 жыл бұрын
What type of problem she is facing
@rekhakumari5017
@rekhakumari5017 2 жыл бұрын
@@erumsaleem9700 now she is ok But before the treatment, no. of blisters were formed in her skin which was very painful n etching problem is common
@vasusoni1572
@vasusoni1572 2 жыл бұрын
@@rekhakumari5017 r ur mother is fine now my mother is also suffering from this diseace phemphigus valguris plss suggest some treatment for phemphigus valguris wee aree so much tensed about this diseace plss suggest i want to consult u
@rekhakumari5017
@rekhakumari5017 2 жыл бұрын
@@vasusoni1572 don't worry there are two treatments is very effective 1)DCP therapy 2)rituximab injection My mother have been given rituximab inj ago 10 months .And there is no any side effects she is better now
@antioniti
@antioniti 3 жыл бұрын
My word of advice for all those young non JEWS and able people STRICKEN WITH💀 PHEMPHIGUS IS TO FIRST SEEK A RADIATION TEST ALL OVER YOUR BODY WITH A GEIGER COUNTER. THEN IF RESULT ARE POSITIVE SEEK THE SOURCE OF THE 👺ACCIDENT.😵AND quickly SUE😠
@NoSuffix
@NoSuffix 3 жыл бұрын
Thank you for the video! Pemphigus Vulgaris is such a rare and strange disease that many dentists/doctors aren't aware. Even the specialists are not sure what are real causes of PV.
@ruthelizabeth4653
@ruthelizabeth4653 Жыл бұрын
Sure.no one can provide proper medical advice and also treatment.
@DrEduardoBeltran
@DrEduardoBeltran Жыл бұрын
@@ruthelizabeth4653 kzbin.info/www/bejne/jp2nf3mMhsyNec0