Saturday, May 18, 2013

PWS Awareness #18: the PWS Community Kicks Ass

I know this is about facts, but this is as close to a fact as you can get with an opinion.  Yeah, we've all got our problems, and we don't always see eye-to-eye on certain treatments or what-have-you, but other PWS families are the best people you never wanted to know. 


A study of families with children with various developmental disorders found that PWS families experience the greatest amount of stress. We know this firsthand to be true. Trying to control your child's environment at all times (especially with food, which is *everywhere*) is beyond exhausting. But I can't tell you how many times I have thought that I can't do it anymore, and I either talk with other PWS parents or just think that they're all out there doing it, too, and I know that I can keep going. I can say those things and ask those questions that might seem taboo, and I'm met with great support.

I am consistently amazed at the determination of PWS families as they raise awareness for their loved ones, dedicate themselves tirelessly to caring for their loved one with PWS, fight insurance companies (don't even get the PWS mama bears started on this one, it gets ugly :)), staff support hotlines, head up fundraising events, plan conferences, even go to the White House to rally the cause!

Going to conferences has been life-changing. Being with other people who "get it" is so freeing and the connection is always really special. We get to learn about the latest treatments, latest research, and hear from specialists who actually *know* PWS and teach us so much.

Shout-out to the PWS families!
(photo credit for the second picture is Epic Photography by Jamie Schoenberger - a PWS mom!)
















3 comments:

Giulia said...

Hello Ali,
Ok, one point I wish to raise.

PWS is said as the developmental disorder that provoke the greatest amount of stress to families.

While I completely hear your feelings, I want to raise the point that "various developmental disorders" does not mean "all developmental disorders".
So, other serious developmental disorders have not been studied. We don't know if these unstudied developmental disorders provoke a greater or a lesser amount of stress.
Families of children with serious mental illness (bipolar disorder, schizophrenia) face a great amount of stress because of all the factors you listed, + the stigma attached to these diseases. This kind of disease when the affected person is a young child has not been studied to my knowledge.

Stigma does not help, it adds more stress and burden than anything else. Stigma prevents from getting the help we need, even from doctors.
I know it first hand and of all stresses, stigma is the greatest.

All what I said does not imply that your stress is less valid than.
Your feelings are completely ok and heard.

But as not all stress by serious developmental disorders have been studied yet, we cannot say that "it's the illness generating the greatest stress of all illnesses".

I wanted to clarify this point more for a third party reader than for an advanced online patient.
(let not forget our third party readers when we write. Because advanced online patients have been third party readers at the very beginning of their journey :-) )

Ali Foley Shenk said...

Hi Giulia,
I intentionally used the word "various" and not "all" because it was one study and they did not study all developmental disorders. I don't think there would be any confusion if someone reads what I wrote, because I used the word "various." And of those "various" disorders, it *was* found to have the greatest amount of stress on families. I did not say "all illnesses." If you would like to learn more about this research, I can point you to Elizabeth Roof at the Vanderbilt Kennedy Center in TN.

I completely understand that there are many other stresses that families could face. I myself have bipolar (which I have talked about before on this blog) and it has been very stressful on our family. But bipolar and schizophrenia, the examples you gave, are not developmental disorders. I'm not talking about those.

I'm not sure why you continue to assert that I am writing for an "advanced online patient." The overwhelming majority of readers of this blog have no "advanced" involvement with PWS or any other medical issues. I have received only positive feedback about how helpful posts like this have been. I ask that you please take what I write and respond to that instead of saying that I said something I didn't and then correcting me on that. Thanks for your understanding.

Giulia said...

Ali,
I say you are an advanced online patient. We cannot deny that you are very knowledgeable about medical stuff and especially PWS.
It does not mean that you write for advanced online patients.

What you say is also very true. But, if what you write is understandable by most intermediate people, someone who reads your blog for the very first time while being a very beginner may not get your explanation.
I have been a third party reader + a very beginner in these stuff, and if someone didn't explain me these subtle differences, I would not had been able to understand your blog post, no matter of my intelligence level.
Let me tell you also that the medical message board I moderated for years was a big public forum, easily reachable through Google, so it had members of heterogeneous levels : some were very knowledgeable and some were so clueless to the point of not understanding the difference between "doesn't exist" vs "has not been studied yet". No joking, some people were that clueless.
I moderated that forum for 5 long years and I had the time to witness such situations. I had the time for being surprised about how a simple post about a specific scientific study could be difficult to understand by many people without any background scientific knowledge.

I add that I did a research on "Prader-Willi syndrome" or "PWS" on Google, and your blog was on the top 10 results.
For me, it's a very reason to feel a duty of filling the knowledge gap between third party readers, especially when we talk about medical studies published by researchers.
It's also for me a very reason not to assume that all readers will understand your post. Not because they are stupid or because something you did, but because not everyone has the background scientific knowledge to understand your explanations about this study. A very reason to fill the knowledge gap between readers again.

If your blog was private and only a few people read it, people we already know, it would had been a completely different story.
If your blog was private with people we know, we would had known what are their level of scientific knowledge, so, I would not have felt my comment as necessary.

We have very different levels of previous scientific knowledge the same way a teacher will have a class with very heterogeneous levels among the pupils vs a teacher who teaches to a class with homogeneous level among the pupils.
I think about my writings for third party readers more like a teacher who is in a class with very heterogeneous levels of knowledge, who needs to fill the knowledge gap between his pupils.