This morning on my blackberry I had two Google Alerts. Not that it is unusual for sure, but today, these alerts pushed all of my buttons simply because of the language. They used words like "sufferers of Duchenne muscular dystrophy" and “genetic killer of kids”. We have to stop saying this. Our sons are not 'sufferers', in fact, they smile and their smile radiates and touches everyone in range. They are not 'suffering' as in pain and suffering. And, for the most part, I don’t see them suffering or hating their life. Rather, I see and hear from families that they love their lives.

Are we all projecting our 'suffering' on them? The fact that the word Duchenne causes our heart to break, that watching your son on the sidelines hurts, that the worry about what the future holds is painful, that as parents we often feel overwhelmed? Is it OUR suffering and we toss it over to our sons because, somehow saying we are suffering feels wrong? Adds to the guilt we often feel?

And “genetic killer of kids”…Our sons are living longer. Our expert panel members were not ‘kids.’ Duchenne is not a genetic killer of kids. Rather, it is a chronic disease that requires management. Our 'kids' become young men and adults. Let's not suggest they are dying as 'kids.' Let's be accurate. Duchenne is tough and we all want it treated and cured. But let's not frame this as if sons are suffering though life or that there is a 'genetic killer' lurking in the room ready to take his life at any given moment. Tell it like it is - Our sons need care, treatment, opportunities, and a cure. Without these things lined up, we all suffer.

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Comment by Ian Anthony Griffiths on April 28, 2009 at 2:37pm
It still remains a fact that children are still dying from this, mean age is an average, we arent statistics as you know. Care and support still dont change DMD, they help certainly but like I said its still suffering. Being told your dying never made me any less positive. Its easy to say "with the proper support etc", but getting it can be hard, while this disease keeps robbing us of movement. 27 isn't exactly old anyway.

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Comment by Pat Furlong on April 28, 2009 at 1:55pm
Hi Ian,
Thank you for responding and while I have not felt the mental anguish you are going through, I did see it with my boysas they reached young adulthood. THey are not here today and therefore I am only guessing, but I do know they had some difficult days, but I believe their good days completely outnumbered the bad. We were happy. Duchenne was part of our life, but it was only one part, not the whole.

Your comments certainly speak to issues well beyond my blog. Issues related to the choices we are faced with, the decisions we make and ultimately the qualty of life and our appreciation of it. It is not simple as you know. My blog simply said that we, as parents, should not suggest our boys are 'suffering' or dying as 'kids'. The mean age for death in DMD is now 27, hardly a child. Your comments also suggest the critical need for comprehensive, interdisciplinary care and SUPPORT, policy changes so that your SSI not only covers your needs but enables you to be employed and ulitimately to live independently. You need to be assured a life of quality. After Chris died I found he had written a note in his Latin notebook - 'The meaning of life is a life of meaning" and surely, for me and for our family, his life had meaning.
I also worry Ian, that saying this 'genetic killer of kids' over and over and over again, must, in itself, have a negative impact. How many times can a person hear they are dying and not give up? I will not suggest to you that this is easy, I just keep wondering who are we aiming for with this comment.

Duchenne is perhaps one of the most complex diseases in the universe. As you well know, it actually fits under the definition of Dystrophinopathies - a group of conditions which affect skeletal, smooth, cardiac muscle and the brain, to different degrees. It is a spectrum. You have already heard the story of very late diagnosis, men playing a sport and developing cramping, to find he has a mutation in his dystrophin gene. The Duchenne-Becker names are simply based on the fact that Dr. Duchenne and Dr. Becker wanted their names attached. It is actually nonsense and creates significant problems and barriers. We are talking here about a spectrum of illness that may be severe or relatively mild, with some known interventions that slow the process to some degree and with some luck, additional interventions to come.

I also think it is important to understand use of certain words can sometimes create barriers. For instance, at this moment the diagnosis of Duchenne prevents heart transplant. At some point in time an arbitrary line was drawn in the sand that said NO to Duchenne patients. is a barrier to treatment, to a potentially better life.
It is for these reasons that I try to be careful with words, try to express concrete thoughts and ideas.
Thank you for commenting Ian. I am hopeful that we will all work together to understand each other's views and hopefully improve the quality of all of our lives.
Warm regards,
Pat


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Comment by Carolyn Greathouse on April 28, 2009 at 1:27pm
I do understand what you are saying Pat, but people must understand that attitude is everything. I try to follow this saying: "Prepare for the worst, but expect the best." I believe that you have to face the reality of Duchenne Muscular Dystrophy, but you also try and maintain a good quality of life as defined by yourself and your family. Pat and other DMD parents, including me, must remember that they are normal boys and men first, and boys and men with DMD second when possible. DMD is a disease, and should not define who or what you are as a person.
Comment by Ian Anthony Griffiths on April 28, 2009 at 12:56pm
I agree the kids arent suffering, only because they dont know what their dealing with. Im 25 this year with DMD, I feel like im bloody suffering, just because we smile doesnt make it any less deadly, doesn't mean we arent suffering. I'm sorry but it is a genetic killer, boys who are still kids do die from this, every year, us "lucky" few get past 18/21, that is brought about by so called management, yes of the symptoms, its just life support, it in no way makes it easier to live with, its so hard to breathe some days, I have to use my ventilator to survive. Do you know how hard it is to utterly depend on machines, that could break and then what? Power is not guaranteed everywhere in this world, its a huge worry when you know oil is running out. I know it sounds like im catastrophising, but its a real posibility. That kind of mental anguish is another kind of suffering, suffering isnt just pain. Please dont change my terminal illness into a chronic one.
Comment by Jenny Garofalo on April 27, 2009 at 10:32pm
well said Pat! thanks!
Comment by jenn on April 27, 2009 at 6:58pm
thank you, it is too often that in order to gain support ( personal care, insurance coverage, donations for research etc) we have to paint such a grim picture, i often want to tell people how normal we are, we laugh, we argue, we play, we sleep, we work hard and above all we live. the boys have duchenne muscular dystrophy, the are not "duchenne boys" as they are so commonly called.
Comment by Liisa Underwood on April 27, 2009 at 6:41pm
Agreed! Thank you for saying this!

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