@@Desert35 Here is difficult. But thank you.

You are very welcome, here is the patient association in case you need: reconnet.ern-net.eu/patients-organisations-rp/

@@ERNReCONNET hello thank you for the resources however I am not in Europe (I wish I was!) I am in the USA

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 😔 🙏

Here is a link for more info and resources on IgG4-RD: reconnet.ern-net.eu/disease-igg4/

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?

I can't speak to this as an expert or even patient with a concrete diagnosis yet, but I can contribute my personal experiences from the past 3-5 years. Personally, I have various and severe symptoms that correlate to this disorder or another that may be similar that impacts me throughout my body, my nervous system, muscles, joints, eyes, ears, organs, cognition, mind, mental health, and daily basic living has been overwhelming to say the least! My doctors and I are getting closer, though now. It has been quite terrifying at times, extremely painful, and difficult in every area of life with this journey. At 30 to 35 years old, now the difficulty between all the unknown, often unbelieving, or just overextended doctors with such a rare disease, often never quite educated on or ever experienced in practice, even more resistant to understand and support family with struggles to accept such change and significant sickness they can't understand. It has strained my trust in others and often in myself, while knowing and living in my own body. This is just my experience, of course. In the fear, disbelief even with proof of symptoms, damage, and such but with no definite diagnosis yet, personal daily struggle in such pain and handicapp while "looking well enough" to the eye (I suppose), and my age has been such an added stress and grief on top of everything. Hurtful. It is something I have found repeatedly shared by many people suffering from rare diseases as I've sought answers and support. I say all this just to share some of what your family member might be feeling or be going through from systemic body changes that still rarely are all known, researched, connected together, to the pain and limitations, and so many unknowns and limitations in treatments and controlling it. Diagnosis is a great step to health and some recovery, and despite the challenges it is best to keep all hope! I know how hard that can be to have and keep. You caring about them, looking into the disease, learning, and asking questions is amazing!!! Support in this is something everyone of us needs desperately. I don't know the health journey and experiences they encountered along the way to diagnosis but it can be quite rough out here, and in every profession and field right now also, as most individuals have significant life challenges and suffering in one way or another. I really hope the best for you and them in life and commend you for your interest and investment to understand and support your family. Much hugs and love! ❤️‍🔥🤝

Get in touch with the patient association: reconnet.ern-net.eu/patients-organisations-rp/ Stay strong!

hi, here is a link where you can find some info about ERN ReCONNET RP centers reconnet.ern-net.eu/disease-rp/ Hope this helps. Stay strong and good luck!