A Shout Out to Men with Scleroderma
Systemic scleroderma is a rare disease. According to the Cleveland Clinic, its annual incidence is only about 20 cases per 1 million adults in the United States.Â
I have experienced many medical professionals who acknowledge they have heard of scleroderma, but know very little about it. Sometimes I wonder if they google it as soon as I’ve left the room. Occasionally, some doctors have actually googled scleroderma while I am still in the room!
In any case, living with scleroderma means I have to advocate, educate, and protect myself against people’s ignorance. And to be honest, it isn’t really their fault. No one can know what they don’t know, which is why I consider education and awareness to be a very important thing. However, having a rare disease often means one can feel very isolated — unless someone suffers from the same disease, it is difficult for others to 100% understand what we go through.
This is why being involved in a support group is important. There is something very healing about hanging out with others who have scleroderma. It brings about a comradeship, sharing of experiences, and exchange of helpful information, as well as knowing that at least there are others who understand in their heart and soul all of the complicated aspects of the disease and the reality of living with them.
Men with scleroderma
Minorities often have to work hard to be together, and they have to fight to make themselves heard by the majority groups. While I’ve been considering how fabulous it is that scleroderma patients are benefiting from their support groups, it occurred to me that within our adult scleroderma groups there is actually a minority group. I’m talking about the men who live with scleroderma.
My heart goes out to the gentlemen in our adult support groups who not only have to cope with being rare, but they also have to cope with being “rare within rare.” The occurrence rate of scleroderma in men compared to women is estimated at about one man per every 3-4 women. Men must face other challenges as well, including a more severe disease experience and a higher risk of developing pulmonary hypertension. Socially, it must be difficult as well.
I try to imagine what it must be like to be the only male to show up at a scleroderma support group with four women. Now, I know women always make special efforts to invite and receive our gentlemen scleroderma warriors with goodwill and amicability. But it still must feel a bit strange and overwhelming for the men, not to mention having to work harder to locate other males with whom they can discuss specific issues that only men with the disease face.
Being a “rare-within-a-rare” sounds like a soberingly lonely place to be. So my column today is simply to acknowledge our adult male scleroderma warriors.
3 things I would like you to know as a man with scleroderma:
• I appreciate it that it might have been difficult for you to reach out to support groups composed of predominantly women for social and emotional support. It takes bravery to make that step, and bravery takes a lot of energy that we don’t readily have. I really admire you for this.
• It’s really great to hear your experience of the disease, even if it can be different from mine. As a woman with scleroderma, it is interesting to hear how it is for you. Your experience is valid and valued.
• If there is anything I can do to support you better, please let me know. It must be challenging being a minority among a rare group of people.
Scleroderma is a revolting disease. It’s much easier to face within a group, so let’s not forget our rare male scleroderma warriors and acknowledge the special, unique, and important flavor they bring. Let’s hear it for the boys!
***
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to scleroderma.
About the Author
Comments
Kim Wright
I really appreciate this article about men with scleroderma and how isolating it must be as women present with the disease at a ratio of 3-4 to every one man. This is no different to how it feels from a black perspective. One of the things I've learnt to realise is being black and ill means it will manifest itself at a higher severity rate and doctors find it difficult to help you. Doctors aren't able to relate to the black skin. They appear to be used to understandinbg white skin. I constantly get "it's difficult to see things on your skin" or it tends to be different in black people. Therefore, that is more than a lonely and very scary place. Just because I am a woman doesn't mean to say black woman experience the loneliness and isolation any less than the man getting a rare disease is rarer than rare. It is a lonely place being black, being a black woman and being ill with a rare disease. No one understands you and I mean NO ONE!!! I go to my doctors with an overwhelming sense they haven't got a clue about the disease let alone the fact this disease is in a black person. Even the specialist make it known when it comes to dealing with black people and diseases they are fumbling in the dark. That is not only lonely but highly scary. What are we suppose to do - just die. This is why I have taken matters into my own hands and am working my disease through diet because I know the medical profession will be very quick to offer me more meds not knowing how the side effects will worsen or better the disease yet still do so not having a clue about the disease in a black person. When you go to medical school if you can't treat all races equally there is something seriously wrong with you as a professional. Because what that means you go to learn only for a particular race rather than helping all races equally in that you help people (and not just races). To say I can better help you if you are white is a big cop out and failure of being a doctor. It seems there is only a small handful making a difference at the very top but it is extremely slow to filter down. At ground level, we the ordinary people continue to suffer if we are people of colour. So being male because you tend to get the disease much rarer than those that get the rare disease itself is not half as lonely as being male and black. The order or loneliness would be white female (everyone can help them); white male (everyone can help them) black female and black male - black represents everyone of colour. I hold no grudge about being white and being able to be helped. That is just the luck of the draw. But it shows like all the systems in this world it is set up to always fail those of colour and like everything in life we have to work much harder than our white counterparts to just simply survive in this world! It really shows being white you should really be alright cos there is nothing, not a single obstacle holding you back!! This is one time in my life perhaps I wouldn't mind being white as I know I would have a better chance of surviving this rare disease. Life is by far not equal in any shape or form!
Pete
Pete age 55, Limited Scleroderma raynauds and so on.
It's a strange feeling .When the doc say's ,I've got some bad news for you? But the good thing is we can treat it. That was the start for me The first thing was that Finally, they realized I was unwell .I didn't look it. but I felt it, Now a lot of things fit together .symptons problems and so on.
It's still pretty new to me having been diagnosed about a year ago, Still learning But sometimes its a lonely place in here.
Thanks . Pete
Kim Tocker
Thanks for your comment Pete - it's really good to hear how things are going for you. Hang in there and keep in touch....from one Sclero warrior to another :)
Barbara Fisher
Pete- did you test positive for any biopsies? My brother test negative but is certain he has the disease? How was yours diagnosed?
Nico Jojo
My name is Nico. I m 42 years old. Livin in Paris, France. Diagnostic since few days with a systemic sclerosis. Top soon to say diffuse or limited... My first symptoms began one year ago after a corticostéroïd infiltration to manage a pain in my back with joints pains. I was a successfull entreprenor, very active, very healthy, share my Life between an exciting job and my lovely five years old boy... Since this infiltration i live in hell, with oesophagus and stomach involments... I m so scarred of the future... I try to stay strong for my boy but... you Know this deasease...
Jason
Hello, I am a 48 year old man from Illinois. I was diagnosed with mixed connective tissue and scleroderma when I was 27. I experienced severe Raynaud’s disease in my late 20’s. I had developed digital ulcers on 5 of ten fingers at once! Some of the worst pain I have ever experienced! Luckily, I didn’t have to have any amputations, but it was a close call. It took a couple years for my hands to heal. Anyway, after the healing, I went about ten years without another severe ulcer, until now😕 Over the past year I have had significant weight loss and very poor appetite. Also, I have developed two new digital ulcers 😕 What I have learned is that everyone is different and everyone has different symptoms. I think that is why doctors are so uncertain about patients. Right now, my main concern is my weight loss. It is very difficult to put on weight 😕If anyone has any information or suggestions for me, it would be greatly appreciated. Thanks