What is more severe Raynaud's Primary or Secondary?

        As explained in my previous post, Raynaud's Primary or Secondary?,
The names Primary and Secondary have nothing to do with the severity of the Raynaud's Phenomenon.
As a matter of fact, there are very few patients of Secondary in comparison with Primary.

        One might say, "That's not correct, I have heard a lot about Secondary being more complex and difficult to treat, and it is more dangerous." Well, that is true. But it has got nothing to do with the severity.
        It is not very rare that Primary form is more sever than the Secondary. Then what has to do with the severity?
        Well the answer lies in my previous post. Don't worry, you don't have to visit the post. (But if you want more information about the difference between Primary and Secondary form then I can't help it, you must visit that post :p )
        In simple and non-techy language, the name Secondary Raynaud's is given to Raynaud's Phenomenon when, the Phenomenon is a result of some other disease which the patient already has.

Now, my most favourite part, the assumptions!

Suppose, Mark Z. is perfectly fit and fine on medical terms, but all of a sudden he generated Primary Raynaud's on February 1st 2011.
Assumption second: Bill G. has been suffering from Lupus since 98. But his Lupus gave him the gift of Raynaud's exactly on February 1st 2011.
Assumption third: Mark and Bill and neighbours, so all the environmental conditions are same for them.
So, technically Mark has Primary and Bill has Secondary Raynaud's.
Now we will assume that as of February 1st, Mark and Bill has the same severity of Raynaud's.
But Mark did not take care of his Raynaud's, he smoked a lot of cigarettes, drank a lot drinks containing caffeine, consumed medicines containing beta-blockers.
And on the other hand, Bill behaved like a good boy, and did no bad things.
So, on March 1st 2012, the severity of Mark's Raynaud's became more than of Bill's.
Here you saw, how severity has nothing to with the form of Raynaud's.

        Now, one might ask, "Then why is it said that Secondary is more complex than Primary? And furthermore, why is it more difficult to treat than Primary?
Well, for the answer, we will consult Bill!
Here is Bill's answer: "As you know, I am suffering from Lupus since a long time now, my body is a little fragile. When my doctors found out that I am also suffering from Raynaud's, they had to be very careful about my medicines. Because they did not want to give me some medicines that would increase my problems with Raynaud's."
So, you can guess why is it said to be complex/difficult to treat.
        And while it is the primary form, the doctors or the patients don't have to worry about anything except Raynaud's.
        If we take a look at Mark, we can see that Mark has to take the precautions only for Raynaud's. But as his severity has increased, his doctors think that it is time to threaten Mark and prescribe some medicines for him. (This kind of threatening includes "quit smoking, or your body will..." A word to the wise!) Here, doctor doesn't have to be as careful as he has to be with Bill's case. Both, Bill, and Mark are treated by the same doctor, named Timothy G.

Conclusions:

• Severity has nothing to do with form of Raynaud's.
• The only difference is, Secondary Raynaud's is difficult/complex to treat, than the Primary Raynaud's.
• In case of Secondary form, person has Raynaud's and something more. And this persons needs to take care of all of them.
• With Secondary, as there are more than one diseases in the body, it is a real troublemaker.
• You should read the difference between primary and secondary form, and precautions on this blog. :D

Warm Regards,
Kiran Nayak :-)

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Raynaud's Discussion Groups / Support Groups / Facebook Groups

There are several user groups on internet, on forums and websites.
I have visited almost all of them.
But in the end I prefer two facebook groups.
The first one (as of January 25th 2011) has 235 members.
It is very active and helpful group.
This group is public and anyone can join it.
Here is the link to this group:
http://www.facebook.com/groups/raynauds/

The another active group.
The members of second group, (including me) are members of the first group as well.
However, this second group is a secret group. That is, it is literally invisible who is not a member of that group.
Only members can see it, and only members can invite their facebook friends.
But me and other members keep both of these groups updated on same levels. That is if we find something new, we discuss about it on both the groups.
If someone posts something only on one group, then we post the same to the other group.
The second group was created for the persons who want to keep their Raynaud's as a secret.


Warm Regards,
Kiran :)

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Raynaud's Awareness Week / Month 2012

An annual health campaign is held every February, aiming to create a greater understanding of Raynaud's among the general public.

There are several institutions/organisations, who organise little campaign, usually on any Sunday from February. But it is not possible for everybody to attend these campaigns may be too far away from there town. And few people are uncomfortable about telling others that they have Raynaud's.

So we created an event on facebook. Unlike the other campaigns, this is not aimed only at general public. But we also aim this event towards the patients of Raynaud's.
Lot of patients lack about the knowledge about Raynaud's. In last few days, I advised a lot people about Raynaud's, through facebook and some contacted me on my e-mail through this blog.
When I told them something to stop or start they said, "I didn't know it was good/bad for us."
So me, and my fellow friends from facebook created this event.


Raynaud's Awareness Week 2012 (February 1 to February 10)
In this event:

• We expect everybody to share their knowledge, personal experiences, their troubles or funny incidents with Raynaud's.
• Discussion about "My symptoms and problems and and what makes it better." (Its ok, if a user doesn't want share. We respect everybody's privacy.)
• Gain more information medicines/home-medicines/solutions on Raynaud's.
• In an all, have fun, get more information about Raynaud's, talk a lot, and meet new people from all around the world.

I hope whoever has Raynaud's and hears about this event, will join this event.
Me and my fellow friends from facebook are looking forward for this event.
We are hoping that people from all around the world will join this event.
If you, or someone from your family or friends have Raynaud's, then you are more than welcome to join this event.
You are welcome to join this event even if you are a doctor.

As this is an online event, we don't have to go anywhere, just sitting infront of the computer or mobile is all what is required.
Even today, there are lots of misconceptions and lack of information about Raynaud's, and that's what we are trying to do,
spreading knowledge about Raynaud's.


Though originally created as "Raynaud's Awareness Month", this event has been scheduled only for 7 days, to avoid it being stretchy and stale, and to make it more active and fun.


And, don't expect somebody else to do the task.
Do what can you do!
And invite your friends!
:)

We want to unite everybody under the same roof.
So we have to invite all the known people related with Raynaud's before some other roof is created.
:D
So please spread as much word as you can.
:)

Warm Wishes,
Kiran :)

Post Script:

        This event turned out be very successful, but we will not stop here, yes we expect more. So, because of the "public demand" we created one more event for 2013. For more details on that event, please visit:

http://raynauds.blogspot.com/2012/02/raynauds-awareness-week-month-2013.html

                (Post script added on February 13th)

Warm Regards,
Kiran Nayak :-)

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Raynaud’s Awareness Ribbon

There is no official symbol or awareness ribbon for Raynaud’s Phenomenon.
On facebook, me and my friends discussed about this issue.
Though not with the symbol, we came up with an idea of ribbon.
The colour combination is the outcome of this discussion.

Though I worked on this image all by myself, the credit for the idea goes to all the users who participated in the discussion mentioned above.


In the following image, we have used "the three colours", as quoted by a friend of mine in the discussion mentioned above, "red-white-blue, since those are the stated colours our fingers and toes turn..."

We (the creators of the ribbon, including the ones who came up with the idea), hereby give permission to use this Ribbon, as long as it is being used in relation with Raynaud’s Phenomenon, AND as long as credit is being given to Kiran Nayak, for coming up with ribbon's idea.

Mazel tov!

The Credits:
Kiran Nayak, the one who started the discussion regarding ribbon.
Rosemary Erickson, the one who came up with idea of the three colours.
Liz, who cleared the confusion/doubts about turners syndrome.
There are two more beautiful ladies, but as per their request, I am not going to mention their names.

Regards,
Kiran :)


Edit:

The image uploaded above is not a completey square.
So, I creaeted one more image, of 1400x1400 pixels.

 
Here is the link to the group where the ribbon was conceived:
http://www.facebook.com/groups/raynauds/


Warm Regards,
Kiran :)