PBC in the United States

[tealmust]

Hello,

Does anyone happen to know how many people have PBC in the United States at the present time? Thanks!

[mrspeffer]

40-65 per 100,000 was the statistic I read from Aug. 2018

[gwillistexas in reply to mrspeffer]

mrspeffer...I believe that. The first hepatologist I saw here who comes from Dallas, said there is a big cluster of PBC in my city, population of slightly more than 100,000.

[tealmust in reply to mrspeffer]

Thank You for your reply!

[Hidden]

Thank you tealmust. You raised a good question. If mrspeffer's reply is correct, that seems to be almost half the statistic from UK. I wonder, if the stats are correct, what explains the difference. Is PBC less prevalent in US, or is PBC recognised and diagnosed more in UK? PBCRobert will know the answer to this part. I shouldn't even ask because the answer is probably on the PBCF website. It doesn't miss anything.

I'd be interested to know more about what sparked your question, could you please share that with us if you feel like it?

[mrspeffer in reply to Hidden]

Stats are only as accurate as the people reporting. I wonder how many are undiagnosed. The stat i read did not indicate if that was for folks undergoing treatment or just diagnosed.

[Michi1 in reply to mrspeffer]

On that note, a lot of people in the US have insurance with high deductibles and don't go to the doctor unless they have to. If you are in that category, the likelihood you will be diagnosed early with a routine blood test is lower.

[tealmust in reply to Michi1]

This was the case for me.

[tealmust in reply to Hidden]

Thank You for your comment. I was diagnosed with pbc approximately 3 to 4 yrs ago in stage 3. I am a very curious soul so I ask a lot of questions but everything I hear is the basic generic answers that I already know just from reading on websites. I have never liked the unknown and I always have questions running through my head about this disease and would love to know more about it and what causes it so silly or not I ask. I have been told from day one of diagnosis that it is rare and I wanted to know to the best that I can what they consider rare. At first when I was diagnosed I had dropped 35 lbs really quickly and my doctor said it wasn't from my disease but when they put me on urso my numbers got back to the normal range and then about a year after normal I started putting weight on at a crazy pace and I don't understand that. I am now about 25lbs more than I have ever been in my life and my numbers stay just a little high. Also, at first diagnosis I was told that the life expectancy for this disease is 7 to 15 yrs and then further into it I was told you die with the disease and not of it. The two statements seem to be a contradiction to me. Does that mean that this disease will cause other things to kill you within the 7 to 15 yr range? It is all very confusing. Anyway, thanks for listening and I love reading everyones posts. This site has at least made me feel like I am not alone in this. My family from day one has just ignored this because they didn't know how to help me but sometimes it helps to just talk it out. Thanks

[Hidden in reply to tealmust]

You are certainly not alone. And most of us experience not being understood by people who don't have PBC. This means we all find our own ways of managing this aspect of having what perhaps can look to some like like an invisible, or imaginary disease!! There is so much unknown about PBC. I don't know if you joined PBC Foundation, (it's free) who host this site. They are lovely and really the place to go if you have any difficulties with PBC. We on this site, in spite of our differences, can support, encourage and share our thoughts, feelings, worries and experiences, but for hard facts, (Bear Facts is a thrice-annual publication of the 'latest from the best' in PBC matters) I go to PBC Foundation. Have you read Robert's post, "PBC and Life Expectancy"? You'll see the icon with his picture on it, beside the pinned post, which you'll find below right of your post. Keep talking to us, join in on the threads. It helps us all.

[tealmust in reply to Hidden]

Thank you for all this. I am not finding it too easy to walk around these sites but I will try harder to find it. I would like to read that. Thank you for being kind and informational. Are you from the US? Are you female or male if you don't mind my asking? I have read that more women get this than men which really intrigues me as to how that could be.

[EileenUSA in reply to tealmust]

healthunlocked.com/pbc-foun...

Heres a link to Roberts post regarding life expectancy. Hop3 this helps.

[Hidden in reply to tealmust]

I'm one of the 9 in 10 women to 1 man with PBC! It is intriguing isn't it, the female/male ratio? The answer is here, hiding in plain sight, but it hasn't been found yet. I am with you on the "7-15 years", "with it, not of it" lines. It's like telling an alien who wants to find his way around the earth that there are a few landmasses surrounded by water. It's a start, but not a big one! Give yourself time to read on PBC F website, get the PBC App on your phone, and you won't feel isolated with PBC, or under-informed. You'll be as informed as anyone can be, and supported in your personal journey. You can arrange to skype or speak without cost to yourself to the small team of the kindest most knowledgeable people who know from the inside what living with PBC is like. Please share your questions with us, it helps everyone who is interested in enquiry and discovery

[tealmust in reply to Hidden]

Thank you sooo much. I did read the life expectancy robert did and found it very soothing to read. Reading posts on this site has been the only real comfort and hope I have found since starting this. I agree the cause is right in front of us and we just haven't seen it yet. I saw a piece of something on here that someone thought it could be related to the virus that causes mono. I would like to know how many people on here have had mono because I had it very severely when I was younger so that was interesting to me.

[Hidden in reply to tealmust]

I haven't heard of mono, so don't know if I had it or not! What is it? For me, I find it easier to understand PBC in me as a genetic factor that has in the course of my lifetime, been treated to exposure by many, many factors, and these, some, many, all or few have triggered a mistaken reaction in my immune system which as yet, can't be reversed. I imagine PBC to be the lowest common denominator that we share and the rest is as diverse as can be. Although I am interested, fatigue is my worst symptom and that limits how much I can think about what caused this very often.

[tealmust in reply to Hidden]

Where ever I read the mono thing said it is called Epstein Bare Virus and I just thought it was interesting because I did in fact have a very severe case of mono when my children were little. It used to be referred to as the kissing disease but I got it from drinking out of a water fountain and it was misdiagnosed as strep so I actually became very ill before they figured it out. Just made me curious if anyone else with pbc has had mono

[ninjagirlwebb in reply to tealmust]

I was diagnosed 5 years ago & my hepatologist said, if pbc is detected early & patient responds to urso, life expectancy is similar to the average population.

PBC is detected earlier these days due to more frequent & advanced medical testing.

Autoimmune conditions in general are more prevalent in women due to genetic make up. Pbc is considered an autoimmune condition.

While more common in women, I’ve read that the condition is managed better or is milder in women than men. They don’t know why.

The progression of pbc does not correlate with severity of symptoms. Hepatologist tracks mainly the alk phos while also tracking the direct bilirubin along with the LFT’s.

You should feel comfortable to ask any questions you have about pbc & discuss how it pertains to you with your pbc doctor. That way you can manage the condition together.

Hope this helps.

Haley

[tealmust in reply to ninjagirlwebb]

Thank you very much!

[Hastingsgal in reply to Hidden]

I’m from Dallas but lived in UK 30 years. It’s most likely under diagnosed because there’s no nhs. People absolutely do not go to the doctor unless they have to if not insured & there’s a hell of a lot of people not insured! People are amputating their own limbs to avoid doctors costs. Honestly. It’s very bad there. Tealmust, do you live in an affluent area or one with decent medical care for all?

[tealmust in reply to Hastingsgal]

I live in Tennessee United States. Very expensive insurance

[nan1012 in reply to tealmust]

Hi! Are you near Memphis? I live in Arkansas but see Dr Nair in Memphis.

[tealmust in reply to nan1012]

I am in Sevierville TN totally other end from you.

[VeeWat in reply to Hastingsgal]

Yes it’s expensive. I was paying 1200 a month on Obamacare for a few years...then got on Medicare, thank God.

[tealmust in reply to VeeWat]

Hello,

I am only 53 so have a long way to go before getting medicare. I am on my husbands insurance and he is 63 so he will be on medicare in a couple of years so I will be without insurance or will have to find a way to get it on my own.