I just re-read the blog post I wrote almost a year ago, entitled “An amazing 48 hours“. And then I added a comment of my own to those of others ….
It’s 10th October 2011 and I am in my hometown of London. I just referred to this blog post in a reply to a new member of my VW4Causes facebook group who’d asked for some information about my reasons for doing this work and driving across the USA.
It’s actually very heartwarming for me to read what I wrote almost a year ago and to recount how I felt then. I didn’t know what lay head. And neither did I know that rather than 5500 miles and 5 months, I’d drive 7853 miles over 7 months!!!
Now I can’t believe that I’m contemplating doing more driving for MG awareness. Maybe I’ll stay a little while longer here in Great Britain to reflect on the most productive parts of the trip and see if this time I can get some corporate sponsors to partner with vw4causes and engage the media more so that our message can be spread even further afield.
At the same time I am also mindful of how a few days ago I felt very sad to read a post from a lady with MG (and three other auto-immune diseases) with whom I had been attempting to plan an MG Awareness event in Georgia, USA. Debbie, whom I met last December and is one of the most courageous, determined people I know, wrote how awful she felt when she was met by a lack of enthusiasm from others. She has had to shelve the event to next year and in the meantime her health has suffered a set back. She told me “If I had cancer instead of MG, it would be a whole other story”.
I know exactly what she meant. By now I’d be planning how to get my VW bus to Georgia to support Debbie in her efforts. Instead we are wondering what we can do to make a Spring event a success.
October in the USA is Breast Cancer month, and now I am here in London, I can tell you it is the same here, too; at least my local Wal-Mart owned Asda store is filled with pink ribbons. How I would love autoimmune diseases to have that kind of support. I keep imagining that one day the Susan G. Komen Foundation or another cancer charity will give some of their money to charities that support women with illnesses that are autoimmune in nature (75% of all cases occur in women – source AARDA).
Please do not take my comparison with cancer as me saying I do not feel compassion for those with cancer; I do care very much. Yet as an ex Pharmaceutical executive and biologist, I know that the research efforts for a cure for breast cancer (and most other cancers) will carry on regardless of whether anyone raises another penny or not. What concerns me more is that autoimmune diseases are a whole other picture.
Why is it, when we know that more people now have autoimmune diseases than all the cancers, that these diseases are still largely ignored and when it comes to funding for research or support for charities that support patients, the amount of money donated is insanely small compared with the amounts given to cancer causes.
I have always hated inequality in any sphere of life, and this level of inequality makes me very angry.
Please tell me what will it take to change this picture and make people start to support these lesser known causes that account for far more people.
If the figures don’t count, what will?
As a person who has MG and has been touched by the sickness and loss of loved ones with cancer, I know how devastating they both are and I will campaign passionately for a cure for both, however, what I see is a real need for change in the way we go about conducting research. What if we stopped funding research for treatment of symptoms and starting pouring money only into research for cures? Countries need better oversight of the medical communities as well. If there is a vaccine out there on the horizon, that research does not need to be dependent upon pharmaceutical companies support in order to progress to the next level. We need programs that will fund research for cures when they get to a certain point in the process, and it can’t take years to fund. We need to stop paying outrageous salaries for nonprofit CEO’s. There should be a cap at 100K for now. That would ensure that those in the positions are there because they want to be, not for the money. I have many more ideas, but I’ll save them for later.
Love this article! I would be so cool to see the MG ribbon in stores! The other day I wore MG ribbon earrings by Kerri Sweeris. I was asked by 2 ladies what they were for. It was so nice to be able to tell them about MG.
Hi Carole,
I can empathize with you and Debbie on the challenges of getting support for the event. But that is the sad reality of our disease – even if available research now shows us more numbers for autoimmune diseases. It wasn’t an easy ride for us to put Snowflakes together. It made me question myself a thousand times, made me want to postpone to a later date and there was a point when I felt and believed that “good intentions and courage are not enough.” But who else would have done it? or would do the things we do for MG awareness — but those of us who have the disease or whose lives this disease has impacted. My friend and I started planning last week for the next Snowflakes event in 2013, and while I am optimistic I am not sure if I can handle the stress that comes with it — and am now at a point of redirecting efforts that would directly help diagnosis (that’s one of the goals for awareness anyways!). I totally understand Debbie’s frustrations, heightened by deteriorating health conditions. I totally understand your anger… and so I ask the same question … What does it take to get support and attention for lesser known and often misunderstood diseases like MG?
Carole,
I, for one, appreciate you and your efforts in bringing awareness for myasthenia gravis and autoimmune illnesses. Having been a nurse and having a strong family history of cancer and heart disease, the autoimmune illnesses in my family are not taken seriously by physicians or the medical staff. When you mention the word myasthenia gravis, medical staff (most) have no clue what you are even talking about. This is sad because MG effects so many people and autoimmune illnesses are becoming even more prevalent. All I can do is share with medical staff what it is and how important my medication is to me when I am in the hospital. I made brochures to put in physician offices and hospitals. I will never feel sorry for myself and I will continue to pursue my efforts and hope one day our world will realize that all illness, chronic and acute need help in every way. Education is the first step! It begins with one person and I try to do my part. It is hard when the autoimmune illnesses have put me in the hospital 50+ times in the past few years, caused blood clots (3 occasions), having to use a wheelchair or braces to walk. I have learned to give up a lot of things I loved doing. My family had to go through the steps of grieving just as I did but some are still stuck in some of the stages. On some days, I feel down but I will not allow myself to stay in bed or lay around. My life will have meaning. Not as a nurse but as a person with MG. I am still Debbie, just Debbie living with MG and the other autoimmune illnesses. It has hurt me financially, physically, emotionally, mentally and I miss the life I had. I am still learning to find the love for living I used to have. It will come one day……………….. http://www.livingwithmyastheniagravis.com
Thank you so much, ladies, for the comments each of you have made above. Your views and sharing of your experiences, adds much more value to what I write here. THANKS very much xox