As individuals, many of us with chronic illnesses are prepared to live different lives from the main stream whether it means accepting physical limitations in the way we do things or odd, sometimes questioning looks because of our appearance. Still, I don’t know of anyone who wishes their kids to live outside of Wellville, where all of the healthy spend their lives. Why do we try so hard to make the case for our lives being as good, as full and then wish for other types of lives for our kids?
I was forced to ask myself this question as A relished getting an American Girl doll as a Christmas present from my mom this weekend. In the past, she has refused to play with dolls saying only they scared her. Meanwhile, she was playing with all of her stuffed animals like most girls play with their dolls. I used to wonder if there was something comforting in having them be so unlike her. It’s easy to say I want her to feel comfortable with herself, and I worry the creepiness she felt with the dolls reflected a discomfort with herself. However, I wanted her to like dolls also because they represent another way for her to bond with kids her age. If given a choice, I would put her as firmly in the Land of Normal Life. Why, I don’t know other than to say the bit about self image and bonding with her peers feels incomplete when I try to explain the why I felt happy to see her playing with Rosy (her name for her doll).
On the MS front, I was reading the Medical Letter published by The Medical Letter Inc., and they quoted a randomized double blind study from Europe showing BG-12 reduced relapse rates between 53 and 48% versus placebo. The range is because some patients were given 2 doses a day and others 3. Noteworthy is the part about it significantly reduced the rate of disability progression which is the first potential front line MS drug to do so.
It also wrote up Campath(Lemtrada) which had a 49% reduction in relapses. During the 2 year study, 20% of patients treated with rebiff sustained accumulation of disability compared with 13% who were treated with Campath (Lemtrada).
The article was actually about Teriflunomide, but with only looking at success inhibiting MS progression, I didn’t see a lot to recommend it over the existing front line drugs other than it is another oral medication. BG-12 actually looks like a mid road between the existing front line meds and Tysabriwithout as much known risk.
I would link the article, but it requires a subscription. I was given a copy of it by my sister-in-law.
(To continue reading proceed to the next page))
On the cool to me side, two things happened this week. I finally submitted my data request to patientslikeme.com in an attempt to get data for a study on the seasonality of MSsymptoms. I mentioned the study I would like to run in an email later revised back in April http://thelifewelllived.blogspot.com/2012/04/meaningful-success-or-failure-both-only.html. I only just now had time and energy to revisit the study proposal. I changed the original to define the 5 symptom categories and specify I would only look at the 100 most frequently reported MS symptoms.
Secondly, I was interviewed by a reporter for the Financial Times of London on how social media like Patients like me (linked in my useful sites list above) influences my choice of MS treatments.
We talked about it as a source of data for studies patients, and how it is a useful tool for patients tracking their medications and conditions.
The issue of privacy came up as patients are willingly giving up personal information, but I still maintain the public good is well worth the risks.
Of course this is easy for me to say as I work in an environment where I don’t have to hide my MS.
As a side note, I find it a little funny after 15 years working producing and analyzing economic data to have my first interview with the Financial Times be about my postings and use of a web site I use to learn about my MS.
Note in response to a few requests, I have added the follow by email to the bottom of this blog.
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True. At the very least, we don’t wish our kids an abnormally difficult time. Still, when I watch her with younger kids and animals I think there is a gentle empathy she has gotten from all she has gone through. Having it now, I don’t know that I would trade it for sparing her the ordeals. I honestly don’t know because it’s such a part of how she expresses who she is.
Because “normal” is easier and don’t we always want what is easy- especially for our kids?