http://www.aarda.org for more on Autoimmune Diseases.

I have a chronic auto-immune disorder of the bile ducts in my liver. It’s called Primary Sclerosing Cholangitis. I was diagnosed after 8 months of testing, procedures, seeing different specialists. That 8 months was frustrating and difficult; it was 6 years ago this February since I received the diagnosis. The bile ducts in my liver harden on the outside and become inflamed on the inside, and become blocked so that they look like a strand of pearls. The bile, which cleans toxins out of my liver, doesn’t do its job and in fact backs up and causes cirrhosis. When you are very, very sick, you become eligible for a liver transplant. The shortage of organ donors means that some people with PSC don’t have that happy ending. They die. There are a lot of symptoms that pile on as the disease progresses. I now have trouble eating very much because of nausea and digestive symptoms brought on by the liver’s dysfunction. But the worst symptom is fatigue. Like Christine’s Spoon Theory, I have so many spoons each day. And sometimes I don’t know until I get moving (very, very slowly) in the morning how many I really have. I get the “but you don’t look sick” comment frequently.

As far as Nick Cannon saying he has a lupus-like condition, I can understand how he would do that. He may be still in denial and not feeling that bad yet either. The doctors may not have conclusive evidence, they feel, to say “you have lupus.” His agent may be encouraging this kind of statement so he can keep on working. It’s hard to say. But it was such a big moment for my GI to conclusively make my diagnosis, that he was smiling as he said it. I fired him. But then I had to start making the adjustment to the diagnosis, which was very difficult. Bless you, Christine, for starting and maintaining this blog.

 Christine DID ask how we felt about it rather than “How many agree with me?”

Wow!  I didn’t know that about MJ.  That does explain a lot!

Honestly, it could be as straight forward as not having a clear and concise diagnosis. Lupus isnt black and white nor clear cut. Some people have lupus symptoms for years before it shows up conclusively in blood work. Maybe he is nottrying to hide anything…maybe its just not clearwhat the diagnosis is, but it appears to be lupus.

I think many celebrities tend to be in denial about their health problems. More than the rest of us. It may be that they think that actually saying that they have a particular disease or condition might adversely impact their image or ability to find work. They should consider the greater good they can do by shedding more light on the condition or disease they share with others. 

Maybe he has Behcets and the correct diagnosis has not been made yet? There are plenty of autoimmune diseases that are like Lupus – but aren’t lupus.

Christine ,I feel the same way ,the terms he used Lupus-Like either you do or you dont.he needs to really face reality we all did at one time or another about are health.Having Sarc myself.Most of the tome family and dont want to talk understanding, this guy needs to do sum research about his Lupus-Like diesease,Will keep this web site in prayer as always.

I wanted to put up the update on this topic. Nick Cannon was on Good Morning America, Extra, and Access Hollywood today where he did discuss his health issues. He also said he has Lupus Nephritis and goes into detail about how this has change his life and the changes he has had to make. 

http://abcnews.go.com/blogs/entertainment/2012/03/recovering-nick-cannons-rx-no-more-happy-meals/

It’s got to be rough having any sort of autoimmune condition and being in the public eye. People will hear “autoimmune” and jump immediately to the world’s most well-known autoimmune disease. There’s still a tremendous amount of ignorance surrounding lupus, arthritis, fibro, and other autoimmune diseases; until there’s more education– and until people want to hear it– those whose careers depend on their adoring public may choose to be a little more careful.

 If you’re in the public eye, I guess it’s different. People who back your shows and endorsements may not think you’re ‘bankable’ or ‘dependable’. Frankly, if you have lupus – you may not be dependable (I’m not). So, I understand if people want to keep it secret, then there’s the whole:” I’m asking how you are to be polite, but I don’t really want to know” slant on it. I live my life in the open, but I try not to burden those who really don’t want to know (or need to know because they have their own problems). I’ll say this: It was an eye opener to me that Michael Jackson had battled Lupus since 1985 and kept it quiet the whole time. It explains alot… The suffering can’t really be explained anyway.

I’ve always been a klutz, but instead of breaking bones, I sprained joints – resulting in what they used to call “traumatic arthritis” in the ones I’d damaged. I was told it was because my joints were “loose” & this was proven by how flexible I was despite my size. I could never run & I always had to rest when I went for long walks, but it was never from being winded; it was b/c my legs ached after a while. You’d think walking up & down steep hills at least twice daily would have made them stronger, but I couldn’t easily stand to pedal a bike, it took me a couple years to get riding it down pat, it took 5 years for me to learn to skate & I had to use what they called “shoe skates” back then because my ankles were too weak for the kind you just plopped on the bottom of your shoes…..I did learn to dance some on them; I picked up ice skating a bit faster; skiing was an unmitigated DISASTER (I think they had a party after I left…long story). I took Judo so I could learn to fall w/o killing myself (it did end up strengthening my legs, but that might had been more the 4 stories up that I had to go in an old building w/ 12 ft ceilings!) I was always great at swimming (blubber floats) – it’s not weight bearing. From the lifelong migraines, irritable bowel/bladder, Hashimoto’s, TMD, I moved on to dandruff (ended up being scalp psoriasis) & some weird whitish spots on the skin from time to time (thought it was eczema but it’s apparently psoriasis, too), peripheral neuropathy WITHOUT DIABETES (a familial thing that no doctor has bothered tracing) when I was in my mid-30s, & in 1984, I was told I had lupus due to, after 6 months of one case of bronchitis & sinusitis after another, that the joint pain I’d developed wasn’t anything else they’d tested for (like RA), & that I had an elevated ANA. Between then & 2003, the doctors would go in a cycle: Lupus, no not lulpus but RA, no, not RA, you’re nuts/we don’t know what’s wrong, to “why didn’t you say you’d had an elevated ANA before (I had), you have lupus,” repeat.
To this day, put me in the sun (even indirect, winter , or seriously behind the clouds sun) & my whole body will ache – bones, joints, head, eyes, skin; the breeze or the rubbing of clothing (no matter how loose/soft) against my skin will HURT. I will end up with a “butterfly rash” & be that way for DAYS. So, now I have “fibromyalgia with lupus-like symptoms.”
Yeah, kinda mixed up & vague, like most of medicine, especially when it comes to finding out what they might be able to do to get rid of it! Then there’s no mixup: With all due respect to the horror of AIDS, it gets the lion’s share of research money & is largely preventable – unlike autoimmune diseases, which affect mostly women & are spreading like wildfire, costing the healthcare system money, costing companies in productivity, costing the taxpayer in disability payments & associated benefits that some need just to survive fiscally. Let’s not forget the cost of medical equipment & supplies. It seems to me that any country that doesn’t realize how much it costs to have all these sick people. They don’t “get” that many employers won’t hire someone with a chronic illness, nor that, even if they don’t know what’s wrong with you, a certain level of use of insurance benefits triggers them to watch you – because as your use increases, the insurance company increases the employer’s part of the insurance bill – which is sizeable. They then figure that something is amiss. With today’s healthcare costs, self-pay gets unmanageable. Pretty soon, they’re trying to make your life miserable &/or find something on you that they can use to fire you. Leaving/quitting or being fired means you don’t get unemployment, so they’re off the hook for that. ADA accommodations?? Are you KIDDING me??? All they have to say is that it costs too much/would decrease morale/would decrease quality, & they’re off the hook – the disabled person has to prove they lied. Win, & you get the accommodation, but your life will be a misery. Yet, with all this, the powers that be have decided we won’t fund any research that doesn’t pretty much place the blame for the illness on the patient.
Kinda makes me wonder if that conspiracy theorist is right about the increase in everything from fibro & ME/CFS to Alzheimer’s & Parkinson’s – the science seems sound, & it would explain a lot. Why do research that would prove a conspiracy theory? (If you’re interested, check out http://www.whale.to/v/scott.html)
Lupus is the most famous disease known for generalized connective tissue disorders. After a lot of relative obscurity, Lupus & MS have become better known. Any symptoms that approximate either them or RA are going to be used to describe any connective tissue disorder. That’s a positive, in a way. Maybe someday, the conditions the rest of us have will be familiar & people with ME/CFS & fibro won’t be treated like hypochondriacs. We can always hope.

I have Sjogrens, MS and fibro now the doctor finally says their is hip pain. So there is a possibility of adding another auto immune disease to my list Lupus or RA. I have had both test come back positive. It is so hard to different which one is which when you have the test the doctor says so manys time comes out as a week positive. So for me it is live moment at time. Take of care of myself. I do not believe celebrity should come come out say Lupus like. It can really increase the difficulty for patients when the doctor says it them or the patient is doubting it. I went through it with my MS for over year it was early MS possbile maybe not but they had anit itch drugs 4 of them to counter out the interferon and then Tysabri now Gilynea. So now it is MS with lesions through the brain. Just had MRI down now there might enhancing lesions we will see. Keep on going spoonies

I wondered when I heard that, combined with what I’d heard about his blood clots, if what he had was anti-phospholipid antibody syndrome. In addition to commonly overlapping with Lupus, one of the tests for it is misnamed Lupus Anticoagulant. For someone just dealing with an intense new illness, he might have been a bit fuzzy on the details himself.

As for mild kidney failure, that’s what my father-in-law’s doctors, including a nephrologist, told him he had. Apparently, “failure” is not always an absolute when it comes to kidneys or congestive heart issues. My FIL doesn’t need dialysis (yet), but he’s got some pretty serious kidney impairment going on that they termed mild kidney failure.

I agree that Nick and Gaga should use their celebrity to bring recognition and possibly more funding to research of the “Lupus Like” diseases.  I have several overlapping auto immune problems that was originally diagnosed as Lupus when I was a teen.  Now I know that I have Systemic Sclerosis Scleroderma among a few other AI disorders.   But if a celebrity posted that they had something like that the public would look up scleroderma and say “Oh he has a skin condition”.  I actually have my immune system attacking my heart, lungs and kidneys.  

I have been told a couple times that I do not have lupus, and I completely agree with Christine. If you are celebrity and choose to disclose personal information to the public (which I believe is their choice, they don’t owe it to us by any means), then stand behind what you disclose with 100% certainty, however you have to do that. If he’s certain he has lupus, then say that, if he’s not certain then say an undetermined autoimmune disease or just an autoimmune disease. It is unfair to people that do have lupus to use their disease as if it were no more serious than the flu. (Thanks Steph) From where I stand, from what I’ve experienced, lupus is deathly serious. Not to ever be taken as a joke or to use as someone’s PR helper.

All I can say is ditto and AMEN!

I see you blindly defending one of your heroes.  Why?  Well, first, nothing I expressed could ever be understood as jealousy unless someone didn’t know what being jealous actually means.  Second, I’m actually not grieving, nor am I angry about my disorder.  I’m discussing a topic and expressing my feelings on that topic, and that topic alone.  Lastly, I don’t know if you understood anything in my comment because I also didn’t say anything about Christine’s disorder, nor claim that I knew anything about it.  In fact, I did the opposite… which makes your comment all the less understandable.  I was asking whether she would like to be told how to define her own disorder.  That’s the complete opposite of what you are accusing me.

The majority of your comment doesn’t make sense as a reply to mine.  Additionally, if you can’t consider an opinion that doesn’t already line up with your views, you’re the one with the problem.

I don’ understand why they seem to feel ashamed that they have lupus.  It’s like it is taboo to say the word.. 

I think in some ways, celebrities do want to be vague, which is certainly their right since they don’t “owe” us full disclosure.  Of course like knowing more details, because it makes me feel like those of us battling autoimmune illness are part of a big family. I love reading stories of people living full and vibrant lives despite their illnesses. That said, there is so much overlap among the various autoimmune illnesses, so perhaps as others have said, even the doctors aren’t 100% sure.  I know over the years my diagnosis has changed slightly.  When I was first diagnosed at age two, my initial diagnosis was lupus since I test positive for antinuclear antibodies rather than rheumatoid factor.  Later, a specialist determined that I had one of the more rare types of juvenile ideopathic arthritis instead.  So I do understand that sometimes a diagnosis can fall into a gray area.  

Because I don’t have Behcet’s.  I have something Behcet’s-like.  None of my doctors have ever been able to identify exactly what I have, therefore, they have identified a disorder to which mine is similar.

Accusing ANYONE of not using the language YOU want them to use is completely inappropriate.  It doesn’t matter if they’re a celebrity or not.  It’s even worse in a case where YOU want it for your own gain.  Would you like it if someone told you that you had to explain your disease in a certain way?

I have Undifferentiated Connective Tissue Disorder or Mixed Connective Tissue Disorder depending on which specialist I listen to.  Both have described the conditions as “Lupus-like”.  In reality, they are both overlap syndromes that include Lupus and other AI’s.  I think the “Lupus like” tag is used because it is more recognizable than the actual name of whatever is technically going on. 

So many rheumatologists that I’ve spoken with describe my Sjogren’s as ‘like Lupus’ or ‘it’s a close cousin to Lupus’. So if I hear someone say ‘lupus like’, I know it’s not Lupus but another auto immune disease that’s similar in symptoms. An auto immune disease doesn’t always mean it’s Lupus.

 My Rheumy won’t diagnose me with Lupus. He says I have “boarderline” Lupus. WTH??? I either have it or I don’t…simple as that. There must be a doctor out there that can diagnose me. Maybe one day I will find one.

Toni Braxton revealed on the reality show “The Braxtons” that she is battling Lupus. I applaud her for being so open. She even allowed taping of doctors appointment where they were checking her heart by echocardiogram. Cudos to her for being so open about this crappy illness. I wish her all the best.