television programme lupus

[notoverthehill]

I saw another television with the mention of Lupus. It seems Americans are more aware of the disease then anyone else as its mentioned in lots of different television series This time it was Body of Proof on late after 12 Wednesday morning

[Samh]

I was living in the US when I was first diagnosed. When I told people what my diagnosis was the response was a joking laugh saying "oh that's what everyone has on House".

BUT that does not mean people understand it. In fact people are just as ignorant of the disease and the employment laws mean that you can be sacked with a weeks notice if you are not performing. ( did not happen to me btw ) but know of people who were out sick and made redundant.

I think overall comparing the 2 health systems and employment laws I am so much better of here in the UK. At least lupus is recognised under the disability act.

[gwesler in reply to Samh]

Tell me about it

[miseryislupus in reply to Samh]

I am from US. Maiden name Turner.mothers maiden name Harris. Scotch-irish&french? " But we ate alot if Oats Growing up. Oatmeal that is.

I am on disability with SLE and mental diagnosis. My sister said one needs two diagnoses to receive disability from social security disability. So it's actually good I have a psychiatric history.

With lupus depression is Enough of a diagnosis to get disability, but I don't know if they used that diagnosis in my case. I didn't bother to ask. My new psych doctor increased my prozac &prescribed a mild sleeping pill. That is the new better treatment for depression I have read in research newsletter. Works pretty good. I'm now having a lot of weakness/malaise, & sinus congestion (from sjogrens). That is no good for mood, But at least I'm not depressed. More like mellow. And resigned. Will talk later. Its rough sometimes but it could be worse for me.

[Hidden]

I agree Samh -

I am American and moved to the UK two years ago. Thankfully, I was diagnosed with Lupus while here in the UK. Although NHS takes significantly longer than seeing the Dr. in the US, the understanding and support here is fantastic. Most people in the UK (who are not health professionals) don't know what Lupus is (some thinking it was a degenerative eye disease lol), but they are willing to listen and take my symptoms and limitations seriously. In fact, at my last job, they were even willing to outfit the entire office with diffusers on the florescent lights!

In the US, having Lupus or Firbro (which I have both) doesn't mean you get to be considered for disability. You don't get paid sick leave. Nothing. And you don't necessarily get doctors that are willing to listen to you, rather they just push more and more prescription drugs on you. The unsaid motto in the US is 'buck up' - if you have a serious aliment, you better suck it up and get on with your work, otherwise, they will just find someone else who can do the job. (Even though this is completely illegal).

[Maximilian]

Lupus is covered under the disability act in uk but we can still be sacked for having too much time off due to flares- I work for the nhs and hr are shocking - I've been told if I have anymore time off befor august this year then they'll happily show me the door regardless of my chronic illness!

[Slowmo in reply to Maximilian]

Hi Maximilian, I can't believe that our public sector are treating employees in this way - especially the NHS!

[Whathappned in reply to Maximilian]

Hi Maximilian, That sound about right these days. I am pleased I work for GP's. Its still hard work but the fact it's a much smaller working group and they have a little knowledge on the problem and symptoms helps.

[notoverthehill]

Luckily I am retired but I am still amazed at how many people have no knowledge of Lupus but have noticed more of US tv progammes are bring it to public attention , Unfortunately even health professionals are unaware of this disease Ie nurses who dont know which blood tests to do even the chiropodist had no knowledge of it .

Needless to say I always have information leaflets available to give information. .I have had a consultant who specialises in research into Lupus for eight years and is very up to date with the latest treatment but I can see from posts on here that others are not so lucky. I was treated for a number of years at a local hospital but was never diagnosed as having IT! I was only diagnosed when I had two heart attacks with no visible reason away from home and the cardiologist brought in a rheumatologist The best day of my life .

The only thing I can say even when people are not really interested give them a leaflet !

[Natura]

In America, cancer, diabetes are the number one things talked about in health care. Someone thought lupus was cancer when I told them. My brother said, oh you can't go out in the sun. I have not seen any commercials in NY. There are no support groups on Long Island. Only a chapter in NYC. Hmm....I would move to the UK if I could, but doesn't it rain there a lot. I need the sun, despite lupus. Ha! My sister lives in the Netherlands and has a very low stress life. I think that is what we all need....lower stress, less noise, less everything. I am also not working, but wouldn't go on disability because I probably could work part time because I am considered low end. I am waiting till after the summer to look for work. But, I am also responsible for getting my girls to school everyday.

[gwesler in reply to Natura]

That's why I'm following Lupus UK for the US

[miseryislupus in reply to Natura]

Yeah. I read lupus patients are very sensitive to noise. Boy is that true!!! Especially when I getting tired. I get very irritated with noise. I also have a slight hearing loss which seems a part of lupus also according to my hearing specialist. Words with a lot of concenants can be difficult to understand according to my hearing testing. That's non-vowels. That word "concenants" looks like a wrong spelling. But my Samsung listed it so it must be correct. Take care.

[gwesler]

Don't suppose I can get that show in Denver?

[notoverthehill]

I dont know as I am in the UK but it is an American programme .Sorry I cant help

[Slowmo]

Hi notoverthehill, do you recall which channel it was on as I'll try and get it on catch up? Thanks

[notoverthehill]

think it was stv or itv1 sorry wqs monday or tuesday Body of Proof

[notoverthehill]

thurs 10/04 2100 on virgin chanel153 usa5

[SuePlu]

I am sorry, but I must disagree about not being able to get Disability in the US for lupus/fibro. I was able to, with no problems. On fact, got it on my first try, and it only took 7 1/2 weeks for approval. I just don't want people thinking that we don't qualify for Disability! Also, for those asking..l used to watch Body of Proof religiously! It was an ABC show, but was cancelled about 2 years ago. I actually remember (shocker) the episode about Lupus! Good luck finding it but surely it is hidden somewhere.

[notoverthehill in reply to SuePlu]

Body of proof. landed in the uk the final home for all old series that have been discontinued in the states.

[miseryislupus in reply to SuePlu]

Yeah I got disability really quickly too in the US. BUT AS I STATED EARLIER I UNDERSTAND ONE NEEDS TWO DIAGNOSES TO QUALIFY. I KNOW OF PEOPLE WITH BAD LUPUS WHO I UNDERSTAND DID NOT QUALIFY UNTIL LATER WHEN SHE WAS cODED after hospital had given her improper medicine. I don't know how it goes for everyone though. That's just one strange case someone told me about.

[notoverthehill]

Glad to hear you had such a quick answer even here in UK we are being made to go back and look for work with the government cut down on benefit spending, the bad pennies making the deserving suffer. pity the banks that caused all the cut backs to benefits and the NHS dont seem to be suffering

[miseryislupus in reply to notoverthehill]

The problem I had was getting a diagnosis. I'm From US.

In my twenties it seemed like I was always losing things & my memory was not good. At some point later I kept thinking something is wrong with me. I would go to ent doctor for sinus problems. No luck there. I kept wondering do I have some strange disease & WHaT kind dr. Would I go to to figure this out! Years later, many yrs later I had raynards. I was like what the heck is going on with my hands!!! I drove to a female dr.at that time Who did not diagnose lupus only that I had Raynards Syndrome. Still a dead end. In 2007.I finally got diagnosed. I can't remember what I told this different new doc what my symptoms were. I Remember I was having a lot of stomach quisyness for many years and years ongoing. I probably told him I was weak & tired. I did not have the classic red butterfly on my face they all seem to expect. Well thank goodness he tested me for Something (immune disorders I suppose)& He later sent me a letter saying "I think it's lupus" & referred me to a rheumatologist. It's been 7 yrs since I was diagnosed I'm 59 yrs old now. No history in my family that I'm aware of. But I think maybe it was just a problem of not knowing what the problem was. I did get mononucleosis while in college & that is associated with developing lupus I guess if you are genetically predisposed to lupus.