anyone know about protein c deficiency?

Subject: anyone know about protein c deficiency?
From: Morticia
Date: 29 Apr 01 - 06:27 PM

Yes, it's me again( for those who've read the glaucoma thread)....been a helluva weekend and one I wouldn't want to repeat!Found out today that my 1st husbands brother ( you still with me?) has this and is very ill. I have, once again , been reading up on info. on the web and I know it is hereditary, I know there is a good chance one or both of my children may have it and I know it's serious.Thats about all I could fathom. Does anyone else have further info?

Subject: RE: anyone know about protein c deficiency?
From: SINSULL
Date: 29 Apr 01 - 06:29 PM

Morticia, just once for all our sakes including yours, couldn't you make it something simple? You know - what to do for chicken pox or mosquito bites? I have some medical types who may have more to offer.
Mary

Subject: RE: anyone know about protein c deficiency?
From: Morticia
Date: 29 Apr 01 - 06:34 PM

Sins, my love, don't you think if I could , I would?? This has been a real body blow....much worse than the glaucoma 'cos that's me, this is my kids!!

Subject: RE: anyone know about protein c deficiency?
From: SINSULL
Date: 29 Apr 01 - 06:36 PM

I found some information on google. The most pertinent is that it occurs in 1 out of 300 in the general population. See your pediatrician and don't make yourself crazy about it. It is treatable.

Subject: RE: anyone know about protein c deficiency?
From: Amergin
Date: 29 Apr 01 - 06:38 PM

The things some folks do for attention.....

Seriously, Terri, this has surely been a helluva week for you....My thoughts with you....

Subject: RE: anyone know about protein c deficiency?
From: GUEST,Philippa
Date: 29 Apr 01 - 07:03 PM

There are loads of on-line medical info and health sources which would be better places than Mudcat to discuss these sort of questions
try searches via Lycos, Google, altavista, etc and/or try sites such as http://www.mayohealth.org/
, www.medscape.com (you need to register for Medscape and the info is quite technical),
http://www.askphysicians.com/register.htm

It was actually a Mudcat member who gave me the 3 websites above, but in private communication.

I participate in women's health forums at Yahoo groups and find them very helpful. To find out if there is a Yahoo discussion group dealing with the particular condition you are concerned with, search at http://groups.yahoo.com/

Subject: RE: anyone know about protein c deficiency?
From: GUEST,Philippa
Date: 29 Apr 01 - 07:06 PM

I failed above to make a clickable link to Medscape because I left out the "http:\\" part of the URL

Subject: RE: anyone know about protein c deficiency?
From: Morticia
Date: 29 Apr 01 - 07:29 PM

thanks Phillipa, I have checked out most of the info, on the net .....I feel that here you get the case history,the 'real' story of what living with a particular illness is like........sorry if you don't feel it is appropriate .....but I value it enormously.

Subject: RE: anyone know about protein c deficiency?
From: Amergin
Date: 29 Apr 01 - 07:43 PM

terri, I see no fault in asking friends questions like this....

Subject: RE: anyone know about protein c deficiency?
From: Morticia
Date: 29 Apr 01 - 07:49 PM

thanks Nathan.....I am in a really troubled place here and it's good to have friends to talk it over with.

Subject: RE: anyone know about protein c deficiency?
From: CarolC
Date: 29 Apr 01 - 08:33 PM

Morticia, I don't have anything useful to offer in the way of information. I just want to say I'm sorry you're having such a tough time right now and that my best thoughts and wishes are with you and your family.

Good luck with everything.

Carol

Subject: RE: anyone know about protein c deficiency?
From: catspaw49
Date: 29 Apr 01 - 08:39 PM

Geeziz Terri.........Well, anyway, here's one I have some minor knowledge of. As you have probably found from your reading, this is yet another clotting disorder. I had no idea how many there were until Karen became ill with the pulmonary embolisms last November. Sister Connie has Factor V, a somewhat recent discovery, also hereditary. They tested Karen for over 70 known clotting disorders and found nothing. The best thing here is that you KNOW the possibility exists and can take the appropriate steps in getting the kids checked. Treatment for almost all clotting problems gets down to the same thing......Heparin and/or Coumadin and regular PT/INR checks.

I was surprised at the time that there are not a lot of Docs who specialize in this until I realized that this is more of a research field and even I could do the treatment end. You didn't say what the man has that he is so ill, but I imagine we're talking the same or a similar situation to Karen. Karen had PE's taking up almost 70% of her lungs and we are fortunate (as he may not be) that none of these went any further which happens in most cases where the clotting is undiagnosed for a long period. Throwing a clot to the heart or brain is the worst obviously.

Maintaining an INR at about 3.0 through Coumadin is the long term treatment at this time for almost all the clotting problems including Protein C deficiency although other treatments are prescribed at times for specific situations. Vitamin K intake should be kept within moderation as it makes the INR levels easier to maintain with Coumadin.

Living with the problem becomes a pain in the ass at times because there is such limited clotting that you worry about every cut and bruise and its important to wear an ID tag to notify emergency personnel that the person is on a blood thinner. It sure beats the alternatives though. Have the kids checked and then follow the Docs advise. They may have no problem at all, but if they do, the really important thing here is to KNOW and then treat accordingly. There are a lot worse things than living with Coumadin. Properly diagnosed in good time, there should be no complications such as have occurred with your "ex-brother-in-law." Or Karen.....We were just extremely lucky that nothing went further. Although her lung damage is significant, had we had any idea of the problem beforehand, such as you do now, nothing would have happened to her at all.

Spaw

Subject: RE: anyone know about protein c deficiency?
From: Noreen
Date: 29 Apr 01 - 08:42 PM

Sorry to hear this, Terri- must admit I'd never heard of it as such, but I understand what it's about after looking up a few pages. Presumably, forewarned is forearmed in the case of your children. More positive thoughts for you- you really need them just now!

Noreen

Subject: RE: anyone know about protein c deficiency?
From: Morticia
Date: 30 Apr 01 - 01:53 PM

Thanks again, folks.Pat, my ex-brother in law has been ill for some time, having had several deep vein thrombosis'(damn, what IS the plural for that?).He has significant pulmonary damage and, as I understand it, whilst still comparatively young at 36, is unlikely to be able to withstand any further problems.His life expectancy is therefore, not looking too good.It seems to have taken some considerable time for a diagnosis to be made and I guess that's why he has become so ill. As you say, I am lucky I know to have the kids tested and if necessary treated in time.

Subject: RE: anyone know about protein c deficiency?
From: Morticia
Date: 30 Apr 01 - 03:55 PM

BTW, does anyone know if this could be picked up by the normal tests they run before blood donation?

Subject: RE: anyone know about protein c deficiency?
From: catspaw49
Date: 30 Apr 01 - 06:02 PM

I seriously doubt it Terri......There are so many various clotting disordres and they have specific testing to pick up each, especially the genetic things. They normally run groups of test (Panels) together, but in the main, they aren't looking for the "whys" of clotting problems. Tell them what you suspect and the history.

Spaw

Subject: RE: anyone know about protein c deficiency?
From: katlaughing
Date: 30 Apr 01 - 06:16 PM

Terri, sorry I've been so out of it that I missed this and the glaucoma thread. Will go to it in a mo'. BTW, the plural is thromboses.

You are always in my thoughts, darlin' and now I am off to the other thread.

luvyakat

Subject: RE: anyone know about protein c deficiency?
From: Morticia
Date: 30 Apr 01 - 06:16 PM

Thank you Pat, my stubborn daughter seems convinced this is likely to have been picked up before as she regularly gives blood....I'll tell her what you said and then jump up and down and have a tantrum if she still won't go!

Subject: RE: anyone know about protein c deficiency?
From: GUEST,blackbird
Date: 20 Aug 08 - 12:50 AM

i have this disorder and have been takeing asprin im not on blood thinners yet, but may have to when i get older, i have looked it up but no one has found a cure, but have found it is thought to be a genetic mutation where not enough protein c is produced by someparts of the body

Subject: RE: anyone know about protein c deficiency?
From: Tinker
Date: 20 Aug 08 - 09:25 AM

Okay, yes "the kids not me" can make the emotional cost greater, but it does tend to focus one and taking care of detail becomes important in a way that avoiding diagnois and/or treatment just doesn't seem acceptable.
Knowledge is always important.

Sending you some cslming light

tink

Subject: RE: anyone know about protein c deficiency?
From: bobad
Date: 20 Aug 08 - 10:26 AM

"Patients with heterozygous protein C deficiency usually are asymptomatic until after puberty. At this time, patients may experience spontaneous thrombosis or thrombosis subsequent to a predisposing risk factor. The frequency and extent of thrombosis are highly variable, and a careful family history of thrombotic disease is essential whenever possible. Familial studies of sequelae in protein C deficiency reveal that individuals likely experienced undiagnosed thrombotic events."

Protein C deficiency can be readily diagnosed by laboratory testing. Anyone with a family history of thrombotic events should be tested.

Subject: RE: anyone know about protein c deficiency?
From: lady penelope
Date: 20 Aug 08 - 11:54 AM

Hey Morty (HUgs)

The easiest way to check if the blood donar service check for clotting factors is to ask them.

0845 7711 711

The web site doesn't go into enough detail. But a lack of a clotting factor may not be a high concern of theirs as they may use the blood in a variety of ways.

Subject: RE: anyone know about protein c deficiency?
From: Q (Frank Staplin)
Date: 20 Aug 08 - 01:28 PM

The Mayo Clinic website has several articles on protein c; with Univ. Michigan they are doing research on c-reactive protein:
C reactive Protein

The latest article* is the one linked, but search will get the others.
*"Mayo Clinic Researchers Discover Measuring C=reactive Protein Is Early Indicator of Stiffened Arteries."

Subject: RE: anyone know about protein c deficiency?
From: bobad
Date: 20 Aug 08 - 01:46 PM

To avoid confusion Protein C and C-Reactive Protein are completely unrelated and have entirely different functions.

Subject: RE: anyone know about protein c deficiency?
From: olddude
Date: 20 Aug 08 - 02:27 PM

Make sure they do a very specific blood test for Lupus anticoagulant. This illness is not standard lupus as the name implies. I have a friend that has this. The test is specific and you are describing it.

Lupus anticoagulant

Subject: RE: anyone know about protein c deficiency?
From: olddude
Date: 20 Aug 08 - 02:36 PM

By the way, people with it tend to throw a PE and many other clot related problems. At times there is excessive bleeding, followed at time by bad clots. It is treated with a lifetime of anti clot meds. No cure but people also have many vision problems due to clotting. Nasty bugger. A blood test will tell.

Subject: RE: anyone know about protein c deficiency?
From: Q (Frank Staplin)
Date: 20 Aug 08 - 03:21 PM

Sorry- Should have read with at least one eye open.

Discussion of Protein c deficiency here:
Univ. Illinois C deficiency

Subject: RE: anyone know about protein c deficiency?
From: Morticia
Date: 20 Aug 08 - 03:31 PM

To put this into context, it was all a long time ago ( 2001) and both kids are well and healthy. Strange thread to refresh but there we go.