A Patient’s Journey Toward a Pemphigus Vulgaris Diagnosis

Becky Strong describe her emotional journey towards obtaining a pemphigus vulgaris diagnosis. This honest portrayal of a patient’s search for answers emphasizes the importance of the International Pemphigus & Pemphigoid Foundation's Awareness Campaign (IPPF). Unfortunately, many patients with pemphigus vulgaris (PV) or mucous membrane pemphigoid (MMP) share Becky’s experience. The IPPF Awareness Campaign strives to change this, so future patients can instead describe a story of early diagnosis.
ABOUT THE IPPF AWARENESS CAMPAIGN
The IPPF Awareness Campaign seeks to reduce the amount of time it takes a patient to receive a pemphigus vulgaris (PV) or mucous membrane pemphigoid (MMP) diagnosis. The average pemphigus or pemphigoid (P/P) patient sees five doctors over ten months in search of a diagnosis. Since the majority of P/P patients present oral symptoms first, the Awareness Campaign focuses on PV and MMP - two forms of P/P with increased presentation in the mouth. PV/MMP patients often see a dentist as one of their first clinician contacts. Outreach is therefore directed to dental professionals, who have the unique opportunity to shorten diagnosis times.
ABOUT THE INTERNATIONAL PEMPHIGUS & PEMPHIGOID FOUNDATION
The International Pemphigus & Pemphigoid Foundation (IPPF) is dedicated to improving the quality of life of all people diagnosed with, or affected by, pemphigus or pemphigoid. Pemphigus and pemphigoid (P/P) are rare autoimmune blistering diseases affecting the skin and/or mucous membranes. The IPPF provides support services to thousands of P/P patients, caregivers, and medical and dental professionals.

[@migdaliasantiago9473]

Thanks Becky for sharing. I went through a similar journey. After i found The International Pemphigus and Pemphigoid Foundation i feel i am not alone. I was diagnosed with Pemphigus Foliaceus. Before, it was a nightmare every day and night with no support at all. Family and friends were not able to understand what was happening to me and i was not able to find a way to explain it. But now, i am receiving education about what is PF and support through IPPF support group and conferences, so i am able to understand what is happening to my body and able educate others. Thanks for all the work IPPF do for all.

[@leathasargent9573]

I too went thru what u did. I finally went to the U of M Dental School, I got my diagnosis of Phemphigus Bullua, but I feel I have both. I get lesions in my mouth and on my private places. They hurt so bad. One Dr. Said I had herpes. I told him no, he didn't test me for herpes he just blurted it. I was angry. But a biopsy show me what 13 months of sore throats and lesions! Good for you that you were able to get a diagnoisis!

[@asuila4532]

I appreciate that you are sharing your history concerning pemphigus I would like to thank you deep from my heart. I am also so happy that you are recovering from that very dangerous disease. You have a good husband who stands beside you take care of him. From Sweden/Eri

[@anizar00]

With all the medical advancement we have all over the world, it is strange that almost all the medical professionals don't even have the knowledge or even bother to look at Pemphigus Vulgaris. Sad.

[@tracygomez3431]

I ve been been with on and off sores in my mouth for years but this may 2020 i been in so much pain and i just got tested and i am scared about but to finally find out what i really have will be so much better so i can start on my treatments

[@Arod06]

Thank you for sharing my brother is currently battling PV. Hope your continue to do better God bless and thank you for the resources you provided. Art Rodriguez

[@NiniRockX]

My cat is going through this right now😪

[@suryakantkhilar1507]

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]

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]

@@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]

@@suryakantkhilar1507 ok bro thank u God bless all

[@bajranglal6080]

Sir meri beti ko ye pemphigus vulgaris h koi treatment batay pls🙏

[@bajranglal6080]

@@suryakantkhilar1507 sir meri beti ko pemphigus vulgaris h koi treatment batay pls

[@gloriaraspberry1266]

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.

[@kzimmerman2211]

Thank you for sharing your story and spreading the word about this disease. My grandmother suffered from it in the later years of her life. Medications worked wonderfully to help keep the disease in check.

[@chantheaout8838]

KJ Guest what kind of meditation as I get worse now

[@maricris653]

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]

kzbin.info/www/bejne/jp2nf3mMhsyNec0

[@towardsbettergolf4100]

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]

kzbin.info/www/bejne/jp2nf3mMhsyNec0

[@srr2717]

Same here. Thanks Becky for the video. It took several months for me to get diagnosed.

[@kyliesbubbie]

it took me almost 10 years to get a correct diagnosis

[@faykiddo9780]

same here,it took me almost 2 yrs to get diagnosis,but am so scared it feels like this kind of disease is life time diseases,

[@tayshatyson5772]

Becky thank you so much for sharing your story. I was just diagnosed and am still in the process of healing. To make matters worst I have periodontal disease. It took them 2 years to figure it out. Did anyone have to see a ophthalmologist? I did and they said I was fine and want me to come back in 6 months but my dermatologist doesn’t think it will hit my eyes. I’m still afraid

[@faykiddo9780]

same here taysha,am so scared,can we be friends please atleast to comfort each other,find me whatsap+96879014720

[@DrEduardoBeltran]

kzbin.info/www/bejne/jp2nf3mMhsyNec0

[@justicewillprevail1106]

I’m so sorry you had to go through all this. I wish doctors can have more compassion.

[@joycepollitt7825]

I have suffered a year with this in my mouth. Just in last 2 months they said this is what it is, dr did a biopsy waiting on the results. It's so painful!

[@NoSuffix]

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]

Sure.no one can provide proper medical advice and also treatment.

[@DrEduardoBeltran]

@@ruthelizabeth4653 kzbin.info/www/bejne/jp2nf3mMhsyNec0

[@ore6582]

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]

kzbin.info/www/bejne/jp2nf3mMhsyNec0

[@jesseperez6830]

Thank you for sharing your experience. I am also battling this damn disease, waiting for my insurance to approve me for infusion treatment for it. It's slowly spreading all over and am seriously thinking of paying for the procedure myself, can't wait on the insurance anymore.

[@abdiazizibrahim2525]

Did you take infusion yet

[@jesseperez6830]

@@abdiazizibrahim2525 My insurance finally approved it yesterday and I go in this morning for my first round, 3 long and hard suffering weeks waiting but it's finally getting done 🙏

[@razwankhan9969]

Hello mate hope you’re well how you getting on? Has it been cured? If so how? My bother is battling the same thing and it’s really worrying

[@jesseperez6830]

@@razwankhan9969 Hello there. Well my doctor put me on a heavy dose of prednisone about 3 months ago and it has been under control so far. I am scheduled for an infusion treatment sometime next month and will be off the prednisone soon after. There is no cure unfortunately. I pray your brother fights through it, it took alot for me to find the strength to do so but tell him to hang in there.

[@Lobsterrolly2k]

@@jesseperez6830 how have you been doing since your treatment? My mother was diagnosed with pemphigoid and nothing seems to be helping.

[@TelishaGaha]

What're the preventive measures for pemphigous foliaceous? It's been a year and it frequently reoccurs after being cured.

[@fredhills3153]

Pemphigus vulgaris usually starts orally in the mouth and bullous pemphigoid over the flexor limbs and body in general. I Live in Australia and had a bone marrow transplant for lymphoma and i was at the haematology department when i first starting having a breakout of blisters on my face. Tha haematologist didnt stuff around and called the dermatologist in from next door at the hospital. She immediately sat down with her equipment and completed a punch biopsy and a couple of others. Results were back in the next day and the diagnosis was bullous pemphigoid. So i was immediately given a months free medication that was required to treat it. I was in a unique ssituation and could see how physicians could easily miss the diagnosis or are just to lazy to look further. As soon as i started treatment improvements happened slowly, but the lesions have almost disappeared now and on the way to recovery. Wishing you well if you are still online.

[@inittoo]

Hey Fred, Two months ago my mum was diagnosed with PV. May I ask what treatment you received for the PV? Thank you in advance. take care

[@DrSmitaChakote]

Inspiring

[@jamilamusse5616]

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]

Is Prednisone the reason you became diabetic?

[@laurajakovi9346]

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.

[@hybridhelix88]

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)

[@mrseviegnt4124]

I need help🙏🙏🙏

[@helenmojica6722]

My Yunger daughter is pronóstico for phemphigus snd her mouth, she was had síntomas headaches, tooth 🦷 pain. Blisters en her lips. I need help!!! I’m very worry.. please!! Help me

[@shaniyasyed8517]

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

[@fabulo50s1]

I'm sure the DENTAL FACILITY knew about all the time the grave of the situation(the radiology 4k up) I encountered and told me nothing about it to avoid a malpractice case.

[@debbiedobrzenski8497]

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 .

[@srr2717]

My comments don't seem to appear.

[@brendalee527]

I have a lifetime of experience with autoimmune suffering and would like to offer a suggestion from my observations that should help some sufferers. I feel this is one of my symptoms and not so much the condition. I believe that the idiopathic title can be replaced with a mild case of hair cell leukemia. Treatment can put you into remission for up to 20 yrs. its worth looking at. i hope i can help someone

[@antioniti]

INMUNE SUPPRESANT MEDICATION LIKE PREDNISONE ARE HELPFUL WHEN TAKING IN MINIMUM DOSES. THE unbearable ITCHING ALL OVER THE BODY AND OPEN WOUNDS IS A JOB FOR PENICILLIN TOPICALLY AND ORALLY. WHEN BATHING USED A GOOD CLEAN TUB FULL OF WARM WATER WITH A TEASPOON OF BORIX ACID POWDER AND THEN RINSE IT AWAY. SLEEPING SHOULD BE ENHANCED WITH SOME SLEEPING AID. STAY AWAY FROM ALCOHOL OF ANY KIND AND SMOKING AND UNSANITARY SORROUNDING. RED BUNS VEGETABLES AND IODINE SALT ARE A GOOD COMBATANT OF BETA RADIATION SUCK IN YOUR BODY. . RINSE YOUR MOUTH AND NOSE WITH A PINCH OF SALT. CHEW RED BUNS WITHOUT PEELING THEIR SKIN FROM TIME TO TIME 🤔

[@shahrozkhan7481]

Can you help me?

[@indiansawmill117]

@@antioniti 10 mg of prednisone is minimum dose??

[@srr2717]

my comments don't seem to appear.

[@komalawale9620]

I am also suffering from this diagnosis pl help me

[@srr2717]

my comments don't seem to appear

[@danishmahmood9829]

Thanks for sharing your story .. I was diagnosed like 2 years ago and its gone after having treatment for around 6 to 7 months and now its come back in my oral mucosa and its really bad .. there is swealling in my mouth all the time .. I am having steriods at the moment but its look like not working

[@abdiazizibrahim2525]

After treatment 7 months never come back the disease is that trou

[@danishmahmood9829]

@@abdiazizibrahim2525 it come back after 1 and half year but before its on yhe whole upper body but this time mostly its in my mouth

[@abdiazizibrahim2525]

Need to know bro did u have pemphigus vulgaris or bulous penphigus did u ever try ayureveda medicine I heard it's good couse I have bv this time I need to test is there any to use this u know bro

[@danishmahmood9829]

@@abdiazizibrahim2525yes i have phemphigus vulgaris .... I ididnt try that ayurevada medicine ... but i have watch some videos on youtube and they said that ayuverada medicine is good for phempghigus vulgaris

[@mohsinattique9274]

@@danishmahmood9829 Hi Danish, where are you from and what medicine you are currently using? Azathioprine and Betamethasone? or something else? In what dose as well

[@debhorapedroza1705]

Does it cause memory loss

[@PinkRobinCamp]

took me 17 months to get diagnosed.

[@khalidasaad6142]

how are you doing

[@sarayoung9395]

I worry I have this I have bleeding sores/blisters in my mouth and am prescribed decadron as needed but they haven't done a biopsy because I have gum recession already from the severe inflammation they worry it will cause me to need even more gum grafting but I don't know if this is the right call because then we don't know what it is for sure, they think lichen planus but seems more like pemphigus vulgaris. No way to know without a biopsy.

[@shotta287]

I am in the same boat. Out of nowhere my gums became super inflamed and started bleeding. Few days later came these weird painful white/yellow patches on my gums. Very worried I have this. I have been referred to a dental specialist.

[@nylas100]

Are you better now. Can you advise as to what to eat and what not to eat. How about any vitamins or herbal medicine.

[@cookiesandcreamchannel854]

Garlic, onion, spicy food, acidic food and stress is also a factor.

[@vasusoni1572]

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]

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]

@@rekhakumari5017 plss can u privide ur contact detail so tht my mother will contact u

[@vasusoni1572]

@@rekhakumari5017 can u provide plss ur mobil no so tht my mother will consult u clearly pliss 🙏

[@joycepollitt7825]

Mine started a year ago when I had 3 teeth pulled.

[@Wonderlustpriti]

Did your pv cured?

[@Wonderlustpriti]

Did your pv cured?

[@joycepollitt7825]

No it’s still bad. No treatment.

[@fariajaved5680]

Dear Becky I'm suffering from same , no doctors could make out with all tests and scans until It showed on skin then I was referred to dermatologist now on steroids. 😔I'm told to eat everything, but eggs and meat affect more .

[@antioniti]

Steroids just make it worse.(your skin wiil turn very thin and and your hormones levels should a disaster. PEMPHIGUS should be treated like when you had been exposed to a dangerous X RAY RADIATION.😡.

[@fariajaved5680]

@@antioniti I'm on prednisolone

[@mygarage..736]

i have pemphigus vulgaris...plz help me

[@jgashi318]

My father is 57 years old and has been suffering from this disease Pemphigus Vulgarisfor 10 months,has used different types of drugs such as "Prednisone" and "Azathioprinium" and has not shown results. Now the condition is only getting worse, please if may you recommend something to me.It's very urgent!🙏

[@nylas100]

I'm on both drugs mentioned. 30mg prednisalone and 200mg azithioprine I have flared up badly and have been suffering with terrible blisters all over my body with the most on my back where I am unable to sleep as I can't lie down the blisters break and weep. My clothing gets stuck to them I even stuck to my bed. In the morning due to this I have bigger deeper sores. Another medicine has been added now mycophenolate mofetil it's my 2nd day now see if this helps. There is a group on Facebook pemphigus vulgaris it's very helpful. I got to know of special dressings which have helped somewhat.

[@ambala1981]

Rituximab

[@nabidsarwar2805]

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]

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.

[@saurabhnimbalkar3868]

How long time required to get rid off all the symptoms plz reply

[@internationalpemphiguspemp771]

Hello, Saurabh. Please contact us directly if you need assistance. You can email [e-mail]. Due to privacy laws, we can't discuss the specifics of a patient's disease activity on social media.

[@fabulo50s1]

I VISITED over fifty dermatologies and they be asking me if used drugs,was gay or something,when actually never been there. I could never figure it out ,untl many years after when i recall my encounter with an X RAY tech. who overdose me back in 1988 in the dental x ray room.

[@fabulo50s1]

IT WAS after decades that i came to realized how i came about with this curse .Because it never was able to pin point the origen. People thought i had AIDS or used DRUGS. and I NOT A JEWS. A trip to the dentist send my life on a spiral.

[@fabulo50s1]

I was in 1988 when I pay a visit to my employer dental facility . I was placed in a room with an X ray machine going around my head. Once i left this room i felt almost knock out,like a punch to the head. I wasn't long before i got this systom like that of PEMPHIGUS BULLOUS. My intired body was like i had been recently in a fire. I was study in all the best hospital in NYC and all they could say was i had pemphigus. For years I was on PREDNISONE to cut down my inmunne sytem,and it eventuaclly destroy my hip joints.(had to ge a THR). Now i just want to make you aware that a dose of miscalcutated radiation can haywire yours inmune system and make you LIVING DEAD..