Men and Lupus awareness Month

[bklynmom]

hi,

Why is whne I see the Lupus Awarenss news stories being brodcast on the news they hardly ever mention men with lupus> As a mother of a son suffering from Lupus Nephritis I feel they should stop calling it a womans disease. It demeans the men who gets the disease. I rarely hear any coverage of how the disease affects men. For instance did you know that men almost always get the severe form of Lupus. I had to learn this the hard way. My niece has lupus which is in remission for seven years now. I thought he would not have a problem. I met other women with the disease. My sons sympthoms were much more severe and becase they only touch upon how women are affected. The disease took us for a loop when his kidneys, pancreas lungs all were afected at the same time along with his heart. I think people should get the facts out there and let them know that although they call it a womens disease it definitely is a not the same disease when it comes to men. It took me several months of research to find out what we could do to help and educate ourselves about this disease. If they had shown the way it also affects men I would have known it was severe. I think its time somebody out there gave some attention to the men's side of Lupus as well.

[Lily]

Hello and welcome :welcome:

I'm so sorry to hear that your son has been diagnosed with such a severe case of Lupus. It's a scenario that presents itself sometimes and in some women that's also true. Although women are more likely to be having regular checkups with their doctors and in general see a doctor more often than men do.

I think the Associations are trying to change that view of Lupus being a womans disease, certainly informed people and doctors know that is not the case. You may find it's the press at fault in many instances and ill informed doctors and many other factors to be honest. Here in my country the Lupus Association has a poster out for World Lupus Day which shows 9 women and 1 man as part of the publicity. And that's about the statistics at the moment. However there may be many more men out there with this and because it's not as common in men they go undetected until the disease presents itself seemingly quite suddenly. But hopefully with more awareness and publicity and better GP awareness a lot of that will change. The GP's are a good starting point as that's our first port of call with any health problem- as a general population they usually know little about Lupus.

We do our best here but often it's only men who are already diagnosed that stumble across us, or those who have been ill for many years without explanation that find us. Hopefully with better awareness that will change. Your local lupus chapter and parliament is a good place to start lobbying for more awareness for men with this disease.

I hope that you find the site both helpful and informative and my very best wishes go out to you and your son.

love
Lily

[Ventoboy1000]

Hi Bklynmom,
I totally agree with what you have said.
I am male, mid twenties and have severe SLE with kidney, lung, heart involvement and APS.
I have been through 4 years of **** with this condition, 2 years trying to get the disease under control, with a full year spent in hospital.
The treatment(Pulses of steroids and chemo) are not nice also.
I hope your son is a lot better now and that they have the disease under control.
Take Care
Vento

[bklynmom]

Thanks for the info,
I was just venting after seeing a newsbroadcast last week. He is now doing better. on Steroids, Plaquenil and two blood pressure medications. He is currently in the process of being placed on the kidney transplant list.
People have a strange reaction when I tell them my son has lupus. They don't understand why my son gets so sick because they know other people (all women)with lupus who live a normal life. I just get tired of explaining it to people. This is why they (meaning- those who broadcast and give info on Lupus) should shed more light on how lupus affects men.

[Lily]

No worries everyone here understands the need to vent. It's a very frustrating and at times infuriating business. See the thread in Living With Lupus entitled Daily Mail or something similar. It demonstrates just what power the press have to influence peoples opinions about this disease and the misconceptions that can arise from that :wacko:

I'm glad your son is doing a little better and I hope that his climb up the transplant list is a speedy one :hugbetter: I take it he is on dialysis at the moment? And all avenues have been explored as far as Immunosuppressants go?

Stay strong and anytime you need to vent we are here, we fully understand what this is like for both patient and families. It's very difficult for everyone concerned.

love
Lily

[alobreto]

Hi, Mom! ;)
I hope I can call you that! I couldn't remember what the first part was and I don't have a living mom and I think it's an honorable title and all... My word! When I ramble, I r e a l l y r a m b l e ! :P

Yes, lupus can be awful for everyone concerned. I've found that most people don't know anything about it or how it affects anybody whether women or men. I've also found that most people don't CARE about it unless it affects THEM or their loved ones DIRECTLY. :angry:

To make matters worse, it's a disease that affects each sufferer in ways that are different from others with the same illness. How do you explain that, especially to someone who isn't interested? Since it presents in so many ways, it is a true puzzle to diagnose and I think it's a wonder that ANY of us get diagnosed and properly treated! :unsure:

I'm glad that your son is feeling more himself and I, too, hope he heads straight to the top of the list! I have a friend who had the unusual good fortune of being able to get a kidney from her HUSBAND. :thumbs: We can find gifts in the most unlikely places sometimes! :love:
Best regards,
Angela :wave:

[PAPA-VINNY]

Hi Bklyn, :hello:
I am a guy with Lupus and understand the fustration :hissy: ,even on this board people will start there post with hi gals.Even though I can understand why lupus is steriotyped it makes you feel like your not part of the group :cry: or your a freak. And if I weren't in my 50s I probably would not want to tell anyone that I have SLE, what people say is a womans :flowers: disease.Tell your son he isn't alone :welcome: and that he is in my prayers as is everyone else that suffers from this terrible disease.This is a great board :highfive: stay and learn ,ask questions the people are great even the gals. :woohoo:

[smiley]

hi GUYS as well as Gals.....I am sure that the problem is as bad if not worse for men than women.. for many reasons... not only the symptoms but for the fact that men have to work to keep and support families.... and having lupus makes it nigh on impossible... that does NOT mean that women are sometimes not in the same boat.... I did not realise we just greeted the females.. I shall in future try to include the guys too... and im sorry vinny you feel rejected... really i think is just an oversight one which I shall~for myself~ correct...... hugss to all... :D smiley xx
:oops:

[PAPA-VINNY]

:wave: No it is ok and like I said being in my 50s I personally don't realy care but the younger guy's may have a hard time with this.The media and the Lupus magazines don't do a good job explaining that males get Lupus also. It has been documented that guy's that get Lupus are no different than the general population of males as far as there man hood is concernd. This group is great and never had a complaint .But next time if someone address a post to gal's or girls and it is not specificly a ladies problem think of everyone for the sake of the group.Like they say in the Army were all green. :thumbs:.

[smiley]

:D point taken vinny ty ..smiley xx

[Hollowbody49]

As a man with Lupus and a former member of the local LFA Board in my area, it is very clear to me that Lupus is considered a female medical condition. I have a friend who is a doctor. One day I told him I had Lupus and he said that was a condition that only affects black women. This was from a doctor.

At a recnt Lupus Walk... I was the only person whose name tag indicated that I was walking for Men With Lupus. Even coordinators of the event were surprised and embarressed because they set up the walk as part of a women's issues series.

I think men are less likely to post on support boards. I have been to all of them and the women talk to each other like a clique.

So, other than when I do my annual fundraising, I only tell medical personel that I have Lupus. Otherwise, except for my wife, I may mention a symptom, but never the cause.

There are quite a few Lupus Support Forums on the web. Women seem to make up 99.9 % of the people who post. Black women make up the majority of people with Lupus and I hardly ever see posts from black women.

When my term of the LFA Board was about to expire, I begged the other members to bring on a black female to take my place since the board didn't have a black women's perspective. I am happy that they followed my advice. Oh, the local LFA Board also didn't like having Lupies on the Board. I asked why and was told that people with Lupus get sick to often. So a bunch of white male and female board members without Lupus were running the show.

Sad.

As such, I have pretty much given up on forums and LFA meetings. However, I do fundraising which typically results in about $5,000 per year. Otherwise, I'm in the shadows.

Peace. :hissy:

[bklynmom]

Hi evryone,

Sorry I took so long to respond. My computer went down :( and I forgot my user name and password. :cry: Its been a busy month for me since I last vented. My son was placed on the kidney transplant list. His brother volunteered to give one of his kidneys and we just found out last week that he was a perfect match. Hopefully this will help him get some of his life back. He has been on dialysis for a year. His other sympthoms have subsided for now. He was in the hospital because his fistula artery clogged. He is doing better. I try to encourage him with the stories we hear on the news of people that receive kidneys (ei. Alonzo Morning-NBA star, Goerge Lopez -TV star). He is more optimistic now.
To the person who did the Lupus Awareness event -a big THANK YOU...
You may have seemed like the only one there but we were all there with you. :welcome:
It only takes one person to start a movement to have people sit up and take notice- this disease is not just a womans disease. It affects everyone.
The more people educate themselves the better chance the families will have at not ruling it out when the sympthoms appear in thier male children. It took my neice (who has had lpus for the last ten years- now in remission) to direct me in the right direction. She noticed the sympthoms and told me what it was. The doctor then retested him and finally came up with lupus. Women are tough when it comes to getting the right diagnoses. :hissy:
I hope I can get a chance at getting back on tomorrow. I really appreciate the support. again kudos to the great male examples we have out there. I wish the Lupus monthly would print your stories.
signing off bklynmom :wiggle: