CALLING MEN WITH LUPUS - Research Study into the psychology of men with lupus

[Paul_Howard]

Tawanda Pendeke (Health Psychology postgraduate student) at De Montford University in Leicester is looking for 8-10 men with lupus that are willing to participate in a research study.

The research will be looking at exploring the life experiences of men that have been diagnosed with lupus. They will be examining coping strategies, disease impact, support, medications, relationships with self and others and perhaps look at other areas of importance relating to the condition.

The participants will be required for a semi-structured interview, which will be voice recorded. Participants will be given pseudonyms for anonymity purposes. The interviews will last roughly 45-60 minutes. All participants must be aged 18 years and over. Face to face interviews are preferred; however phone interviews will be sufficient if you are unable to get to Leicester. Interviews will begin around March/April.

If you are interested in participating, or would like more information, please email Tawanda on [e-mail]

[scottty]

What about the lot off women who needs psychology help and some women who are crying out

[Paul_Howard Partner LUPUS UK in reply to scottty]

Hi Scotty,

This particular study is focussing on men because they are generally under-represented due to most studies focussing on women with lupus. Please keep your eyes on our blog as we post details of all research studies that approach us asking for participants.

[Nightjar in reply to scottty]

Hi Scotty, Couldn't agree more. I think there is a general assumption that women are better at 'opening up and talking about things' with family and friends and that men 'keep it all to themselves and suffer in silence.' It is known that practically all medical research is done on men - been like this for many years. I understand this is one of the reasons why women suffer, more often than men, from side effects of medication, as dosages are more suited to men. Hope springs eternal(!) ..that things will change for the better in future.

[Gemz84 in reply to scottty]

I understand how frustrating it is for all Lupus sufferers and no one is saying it worse for men than women, but my dad had been suffering for years, as in decades with Lupus and was ignored time and time again. He ended up with heart and renal failure last year and was hospitalised for 3 weeks, in that time I went to his doctors and begged them to consider Lupus of which I was totally ignored. 6 WEEKS later dad had a phone call to say it was confirmed as Lupus, but the damage that flare caused to his heart and lungs is now irreversable and he remains very ill. The defence of all the doctors...Rheumatologists, Vascular specialists, Respiritory specialists, Cardiac specialists, even the dermatologists for not even considering Lupus, is that a male in his 50s has more chance of being struck by lightening than having Lupus. It's just so rare for a male to have it that they wouldn't even consider it even though he had every symptom at the most severe end of the scale. Alot of the suffering females go through with Lupus is thought to be hormone related when it comes to flares in the body, which is why they need to do more research on life factors, genetics and environmental factors as to why it is such a small ratio of men to women that have Lupus, as some of these factors will also help in the research for women that have Lupus with no hormonal effects.

My dad actually had his boss at work doubt his diagnosis as his wife has it and they insist it is a 'woman's illness'.....to my dad, ex solidier, ex firefighter for 18 years....a very proud man, lets just say that made him feel very small. It needs this type of research for Males too.

[lupusjon]

hi im a 59 yearold luppie male whos had to have heart valve surgery because of lupus .and 2 years of work ..yea us men are in a minority ..but i support ALL lupus sufferers