IgG4 related disease: A patient experience
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- čas přidán 18. 06. 2023
- - Short description of the content of the webinar.
The webinar focuses on the patient ́s experience during the course of IgG4 related disease.
All resources and more info about IgG4 Related Diseases can be found here: reconnet.ern-net.eu/disease-igg4/
Speakers:
- Mr Patsalias studied economics at Erasmus in Rotterdam and work as
a manager Partners for all the network operators in the Netherlands. He started to get sick in 2005 (besides some childhood diseases) when he felt a small ball (1,5 cm) in his throat. Later, in 2014 the doctor diagnosed him with IgG4 related disorders.
- Mr Ballarin is a nephrologist, he has worked first in France then
at a University Hospital in Barcelona (Spain) and at the “Universidad Autonoma de Barcelona”. He has been coping with an IgG4 related disease since 2018 and had to retire in 2019. He is the referent contact for the information of patients (IgG4 related disease) and member of the committee
of experts (“membership in progress”) at FEDER (Spanish Federation of Rare Diseases).
Moderator:
- Dr. Van Laar
- Dr. Jose Hernandez
I have IgG4 as well. I’m happy it is getting more attention and more doctors finally learning about it. I’m 43 years old, female in New York.
ERN ReCONNET is working on it, here is a link to the dedicated webpage for more info: reconnet.ern-net.eu/disease-igg4/
I have agent low Hashimoto’s thyroiditis IgG4 with sclerosis of the fibrotic tissue
Just tested positive for IgG4. 42 male.
I have IgG4 disease too,from UK. I'm 45 now and had since 2000. I think I was nearly one of the first diagnosed...at least in UK! Now it's becoming a bit more known about. I have IgG4 pancreatitis, diabetes and chronic kidney disease.
@@evangelistofyhwh. I hope you are getting help and feeling well
It must have been really frustrating knowing something is wrong but couldn't pin it down for so long. A very productive and strong man...Love the positive attitude...
I have IGG4-RD as well. 29-year old female, living in Germany. My symptoms started at the age of 16 and I got my diagnosis just three years ago.
Hi, May I ask you what were your symptoms? I have lymph nodes enlarged but they hurt and make me swell. And more strange symptoms. IgG4 is not known in my country. Thank you. May I ask you who's your doctor who diagnosed you in Germany?
Thank you!
@@lillyrocks2011 Hi, of course you can. IGG4 started when I was about 15 or 16 with an autoimmune pancreatitis. In the 14 years since then I got inflammation and fibrosis on - who would have thought - my pancreas, my liver, my kidneys, my orbital glands and my salvitary glands as well as my lymph nodes. But only the pancreas really bothers me, because the disease could cause a lot of fibrosis before ist was found. The rest of the inflammation was not noticable until 3 years ago.
In 2021 my orbital glands started swelling to about 10 times their size and pressed my eye. I threatened to go blind, so the doctors started to do tests. They soon shifted to my pancreas because of some bloodwork, I presume . They did an MRI and rushed me to the hospital afterwards because the scarring looked like cancer. So I was in hospital when the doctors found out, it wasnt cancer but IGG4-RD. It was a gastroentrologist who diagnosed me in the end, because my pancreas is the organ most affected. He referred me to a rheumatologist and that is where have been getting treated since then.
Hi how are you doing today?
What is your opinion on IVIG infusions.? Do
they differentiate between the 4 different IgG antibodies in infusions?
I’ve had it for 15 years. Primarily affects my pancreas. I think my dad also had undiagnosed igg4 affecting lungs, kidneys and pancreas. He had pseudo tumors in lungs and one was fibrotic. In a flare now. Such a sneaky disease that makes you feel like crap.
Hi how are you doing? I am new to this disease. My igg4 is super super high 😢 I am 35 yrs old women. I am very scared of this disease and looking for someone to talk about it 😔 🙏
Anyone have a TLDR of this? I’m new to the igG4 discussion.
I have igg4 related they were Hashimoto’s thyroiditis
Hi how are you doing? How big is your igg4 pls
Having watched this video, there was no mention about patients diet, did any of the patients avoid any foods as a result if igG4 diagnosis? Since the condition is an inflammatory condition.
We will ask and get back to you.
I have had IgG4 disease for 20 years. Nobody has ever particularly mentioned diet in regards to it... just as a result of having exocrine pancreatic insufficiency from it and diabetes too.
@@deeb4731 - Many thanks for the update.
Some doctors don't like to study "difficult, strange" symptoms so many people will be without the right diagnosis for a long time or maybe they'll never get the right diagnosis.
It's easier to diagnose fibromyalgia so the doctors don't have to study, investigate the patient. 😢
But I don't understand very well, how to arrive to the diagnosis?? If its so difficult and the symptoms so hard to make a gathering. I don't think that in any country the doctors could arrive to the right diagnosis . What kind of doctors should we consult? Thank you
@Desert35 Here is difficult. But thank you.
got diagnosed with igg4 in 2020 currently age 38
Hi how are you doing? Can you tell me how big is your igg4 pls? I am new to this disease and my igg4 is super super high about 500😢
A ' new 'disease.....?? . this allopathic discussion , although I am glad they at least now see what's happening in the body, takes no account of the trigger.....some toxin / to toxins....both have kidney affectation.....perhaps GMO in food ? Although steroid suppression of the immune response is a battle field measure we should be grateful for, it's no long term solution.
Agree. Found out I’m full of mold. Long-term, multiple exposures. So toxins big player. Prednisone destroys my body.
My brother is suffering from this Igg4 disease it effected his kidney, he loss his weight, Firstly we do not know whats the problem and we went to AIIMS Delhi, my brother was treated under Dr.Nitish. For delaying with getting reports and Doctor’s appointment my brother got stone(13mm)in kidney.My family were so worried for my brother and the disease.And after we decided to change the hospital and now he is getting treated by Dr.Abhishek Patil in Manipal hospital Bangalore, The doctor prescribed him Tocilizumab Actemra(it’s a injection)/Mycophenolate (its’ a tablet).The doctor recommend him to take any one of them either injection or tablet, we asked him and he told with his best to take injection.
Here is a link for more info and resources on IgG4-RD:
reconnet.ern-net.eu/disease-igg4/