Recently Grace sent me an email letting me know that her sister Peggy had been diagnosed with a somewhat aggressive form of multiple sclerosis (MS). Her family has been coming to terms with what this diagnosis may mean for Peggy's future. Admirably they are all being proactive about this diagnosis.
Grace has asked me to share a few things with my amazing readers:
First she asked that I help get the word out, letting my readers know it is MS Awareness Month. I encourage you to go to the MS Society web page to get educated.
Grace wrote, " A friend of mine had a good point. Most people think MS is like diabetes and that it is something that can be managed. MS is progressive and depending on its severity people become completely disabled. And, as you see below, little is known about how bad MS is going to be until they see how bad it is and they cannot stop any MS from progressing".
Here’s some good information from their website on MS:
“Multiple sclerosis is a progressive disease for which no cure has yet been found. Although we have treatments to manage the disease course, they are only partially effective, which means that some people’s MS will worsen in spite of everything they and their doctors do to try and prevent it.”
“The hallmark of MS is its unpredictability—which means that the doctor can’t predict with any certainty how far or fast a person’s MS is going to progress or what the outcome is likely to be.”
“Sometimes MS symptoms can progress to the point that they significantly interfere with daily activities. Changes like this can threaten your self-confidence and feelings of self-worth. When this happens, remember that maintaining control and independence in everyday life doesn’t necessarily mean doing everything the same way you did it before.”
Next Grace has asked that I direct you Peggy's Walk MS page and if you feel so inclined you can make a small donation. She is nearing her goal. If you happen to be in the Seattle area you could even join her team on the walk.
Finally, Peggy is planning to set up a blog about her experiences and I will let you know the details as soon as she has set it up! Peggy told Grace that she thinks it would give her motivation to go out and do things so she has something to blog about (like hiking, exploring, baking, etc.) besides MS.
Just to help a little further, here is the email Peggy sent out to everyone:
I was diagnosed with Multiple Sclerosis last July. Life has definitely been different and unpredictable ever since. So little is known about this disease that I don't think I can honestly say I am fighting it, rather just dealing with it. The cause is unknown, the cure is unknown. Even options for treatment are limited and have side effects that are not known in the long term, are very unpleasant or are deadly. Immediately after diagnosis I was given the option of four different drugs - all injections and 3 out of 4 would cause me to feel like I had the flu. I chose the daily injections with the fewest side effects but apparently I have a somewhat aggressive form of MS so that did not work for me. My next option was an IV infusion every 28 days. Easier than the daily injections but also riskier. I go in the hospital on Friday for my second infusion so it is still too early to tell if this treatment is working for me. If it doesn't, then my options go down to pretty much nothing except one or two pretty scary and very unpleasant treatments. A once daily pill was rushed through trials and approved by the FDA a few months ago, but the long term effects are not known. Research is underway to find more effective treatments. The MS Society is working hard to further this research and to try to find the cause and the cure. I would love to have better options for treatment and would love to have the cure even more! Your donation could get the world one step closer to this.
On April 3, 2011 I will be participating in the Seattle Walk MS to help raise money for research, education and services for those with MS. Please visit my page to learn more and to sponsor me!
Please also visit the MS Society's main page to find out more about MS, the research they conduct and the services they provide.
Thank you so much for your support! Every little bit helps to find the cure. Please feel free to forward this on to anyone you think might be interested in helping. If you are in the Seattle area join Team Pineapple and walk with me!
I hope you will all take a moment to look at the web pages I have linked to. I am totally inspired by these women and I know you will be too!
Do you know anybody who has been diagnosed with MS?