Stumble It!Dec 13 2008
Support Saturday - Patient and Caregiver CIDP Support
It should come as no great surprise that I’m going to discuss in greater detail the forums provided by the GBS-CIDP Foundation International. Anyone who has been affected by Chronic Inflammatory Demyelinating Polyneuropathy needs to visit these forums.
As stated previously in this blog, unlike the majority of the online forums I’ve visited, the ones located at the GBS-CIDP Foundation International are fairly active. You’ll rarely have to wait more than a couple of hours to get a response to a post. It’s amazing how much stress can be relieved just by knowing someone will respond to your question soon, instead of having to wait for days or weeks as I have had to do on other message boards. That almost immediate access to knowledge is especially important if you have a rare disease like CIDP where not a whole lot of information can be found about it online.
The forums at the GBS-CIDP Foundation International is filled with a mix of people who have been living with or caring for someone with CIDP for years and those who are newly diagnosed. Since the disease progresses differently in everyone, you can find people with various levels of disability. That can be extremely helpful if you’re newly disabled or having to encounter a new situation or experience with a disability. Also, no matter what treatment option your neurologist and you settle upon, odds are good someone is either presently on a similar treatment or has been on it in the past. Hearing their experiences with the various treatment options can help you know better what to expect. As we all know, it’s one thing to read about the side effects and another thing entirely to actually hear someone discuss how the side effects affected them.
Just about any kind of support you need can also be found at the forums. Anything from needing cheering up after a bad day to worries about job hunting with a disability have all been addressed by the loving, caring members of the message boards.
Should it ever be needed, the admin of the message board is easily reached. They do an excellent job of staying on top of things.
I am not exaggerating when I say that just having access to the GBS-CIDP Foundation International forums has been a huge blessing to me. I’m sure it will be for you, too!
Demyelinating Disease of the Month - Chronic Inflammatory Demyelinating Polyneuropathy or CIDP. More info can be found here.
Read the Blog of the Month - CIDP And Me
Help spread the word, fund research for a cure, and support others by donating to the Charity of the Month - GBS-CIDP Foundation International
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As a member of the GBS/CIDP Foundation International, I am delighted to hear your comments about our forums on the Foundation web site. We are doing all we can for those impacted by GBS, CIDP and variants and it is nice to hear about something that is working.
Aloha,
Phil
Whoops, I meant to say member of the board of directors of the Foundation.