A CADdy gets dressed to go
following are some suggestions we offer from our own personal experiences. If
you have anything to add to our list, please contact us.
When you have CAD,
you need to be certain that you keep warm at all times. For some, anything cold
entering your body could cause an autoimmune response resulting in red cell
appropriately is the first line of defense:
Wear warmer clothing summer and winter
because air-conditioning is as much a problem as cold weather.
Don't forget to dress warmly in your home
For outside, be prepared like a good scout.
Always carry a scarf, sweater or jacket and cover-up your extremities with
gloves and socks. Hats, headbands and/or scarves work well outdoors and
in the air-conditioning and look nice for the gals.
Wearing 100% Silk long underwear is a
wonderful option since it will keep you warm and won't interfere with the fit
of your clothes. An excellent product is Thermasilk made by Terramar
Sports Worldwide and can be obtained by contacting
Trailgearusa.com. Tell Sheri you were
referred by this site, coldagglutindisease.org
100% silk glove liners are also available
thermalsilk or woolen thermal
underwear is great. You can also wear two pairs of socks
to try to isolate your feet from the cold ground. Graeme has bought oversized
sneakers so that he can wear two pair of woollen socks to try to keep his feet
Mountaineering type shops are excellent for
buying warm clothing.
You can also buy hand warmers.......small
plastic bags with fluid and a bit of metal. You flick the metal and it sets
off a chemical reaction producing heat. They can be restored by boiling them
in water. Carry hand warmers in the car....keep them in your pockets too.
Warmers are also available in larger sizes.
New Zealand products of possum - wool and
the merino - possum blends are extremely soft and light and they make lovely
jerseys, gloves etc.
The possum hair being a hollow fibre, is wonderfully warm to wear.
Merino is a high-country sheep and has very fine wool to keep it warm in the
Until fairly recently possum wool was very difficult to process. Dyeing was a
particular problem. But for the last 15 years or so beautiful possum wear has
come on the market. It has become one of the most popular articles bought by
overseas tourists, and many of us New Zealanders would not be without our
possum jackets, cardigans, ponchos, gloves, socks, hats and scarves.
'Norsewear' www.norsetech.com is one
brand, but we suggest that anyone interested in these products should google
around the words "New Zealand, possum wear, possum wool, merino possum blends"
and suchlike. There are many firms supplying these articles and there is a
great deal of information on the internet.
New Zealand also has a good range of
sheepskin products available and Graeme can vouch for their calf-length boots. See
the Mi Woollies range at
This site sells gloves specifically
for Raynard's victims:
This was supplied by Roberta:
Prolotex Far Infrared Therapy Gloves and Socks are available from
Juhi said: In my case, I always had a
hard time finding shoes that would keep my feet warm. I had the opportunity
to try and test a pair of the emu boots with sheep lining, and it worked. For
the first time, my toes are staying warm and not turning blue (most of the
from the Isle of Man sent some suggestions
she has tried that help
We take a hot water bottle out with us which Chris places on his
lap whist driving when its very cold and on longer journeys a flask of hot
soup or tea is a good idea.... and those emergency
foil blankets available from camping stores are a good idea in the car or
handbag. We find thin insulating layers best rather than one thick garment,
easier to take off it you need to. Have seen some heated hats, gloves and
footpads for shoes at Maplins electrical store they have a web site, but not
sure how effective they are. We have tried the battery gloves but found them
bulky and heavy when the batteries are in them. Finally a hot bowl of porridge
in the morning is a good idea, and hot ginger punch
helps on a cold day
Claire also advised:
One useful tip I found searching the
internet for anything to help Chris.
I found a site for the SAS about hyperthermia which stated you should
never rub extremities exposed to cold as this can cause more damage.
Nor should you use artificial heating,
but use body heat for your hands
putting them under your arm pit or groin is the best way,
or you can use blankets.
They also said to move your arms like a
windmill back and forth fast to get the heart pumping.
Elsa told me about her
www.columbia.com has a tab for
Columbia Stores and Outlets, and guess what, it told me there were two shops
where I live in Christchurch, New Zealand which sell these boots....or there
were before the earthquakes! You find the boots under their Footwear
tab, and there are both men's and women's.
The boots are designed for winter sports enthusiasts, and as such are often
just what CADdys are looking for. They look pretty snazzy to me.
The advertising tells us
"The boots have built-in rechargeable batteries and electronic controls that
provide three temperature settings for maximum protection from the cold.
On the low setting, heating pads located under the ball of the foot deliver
warmth for 8 hours; on high, expect 3 hours of heat where your foot needs it
most. Rustproof alloy gaiters and convenient speedhooks hold the foot firmly
in place for maximum stability during serious mountain trekking, snowmobiling,
ski lift operation, or Arctic exploration. Combine these features with
Bugathermo’s durability, waterproof construction and Omni-Grip® traction, and
you may very well have the greatest winter boot to walk the earth."
Karen has advised that
"cayenne pepper capsules" are great for keeping
hands and feet warm. You can get these in
40,000 units of heat and work up to 100,000 heat units. She
said they are treated with a buffer so they won't upset your stomach.
they work wonderful, and she has used them for years during the winter months
and they really do the trick!
Be certain nothing cold touches you or
enters your body by mouth:
No cold drinks. Instead of drinking
cold water, try warm, even hot water, it's not so bad.
If you can't live without ice cream,
let it melt a bit.
Always use warm water when washing
and also brushing teeth.
Remind all medical personnel that any
and all procedures must be done under warm conditions - examinations,
injections, transfusions, treatments, surgeries including open-heart. If you
need a transfusion, be certain that a blood-warmer is used, as this brings the
blood up to 98.6 degrees Fahrenheit before it is infused into your body. The
transfusion apparatus may need to be warmed similarly….we have experienced red
cells clumping in a cold needle because the cold agglutinins were activated. No
blood would then flow.
Maintain a healthful diet and get plenty of rest:
Exercise is great for your body and your head
but don't overdo it.
Do everything in moderation and you can't go
Listen to your body!
CADys have found different ways of monitoring the state of their blood.
Obviously blood tests carried out by a Doctor are by far the best. However, in
between these official blood tests we have heard of the following being used.
(1) I (Graeme) found that my pulse was
a very good indicator of my hemoglobin in between blood transfusions. As your
hemoglobin falls, your heart will respond by beating harder to meet the demands
of your body. You might be able to assess what your rate is when "good" and what
it rises to when "bad". In my case it dropped to about 70 after a transfusion,
and rose to 90 by the time I needed another.
(2) Another CADdy told me "
have noticed also that the level of activity of the antibodies is reflected in
my closed eyes. Something like the snow that you see on TV sets. The speed and
size of the dots give me an indication of how cold I have been, eg, while
If anyone has other methods we could add
here, please let us know.
Handling of Blood
Specimens per Dr. Sigbjorn Berentsen
"In theory, cooling of a blood sample should be acceptable
provided it is used only for measuring hemoglobin and CBCs and is appropriately
rewarmed before analysis. The explanation for this is that the cold agglutinin
dissolves from the red cell surface on warming to 37-38 degrees C and the
agglutination of cells will be reversed.
In practice, however, I too have occasionally been
confronted with technical failures indicating that rewarming either did not work
or had not been performed adequately.
Cooling during the analysis itself is a possible
explanation in patients with high thermal amplitude CAs. In such cases, I would
recommend handling of samples as for protein analysis (with the exception of
centrifugation and removal of serum, of course) and running the analysis right
For protein analyses (CA-titer, IgM quantification,
electrophoresis etc.) correct handling of samples is essential for reliable
results. You will find a brief statement on this requirement in several papers,
e.g. at page 366 (Table II) in our article in Hematology from 2007. (See our
Links Page 2007 Primary CAD-an update.pdf).
In some more detail, these requirements can be
described as follows
- Vacutainers (sampling tubes)
should be prewarmed.
- After sampling they should be kept at 37-38 degrees C
until serum is removed from the clot."
Table II - Diagnosis of Primary CAD
Comments and Precautions
Cold Agglutinin titer >= 64 at 4 degrees C
Typical DAT findings
Polyspecific DAT positive
Specific DAT positive for C3d
No malignant disease by clinical and radiological
Specific DAT for IgG is usually, but not always,
Procedures: blood and serum
Hemoglobin level and blood cell counts
Routine assessment for hemolysis DAT.
Specific DAT for C3d and IgG Cold Agglutinin (CA) titer at 4 degrees C.
Complement assessments (C3, C4 and CH50).
Electrophoresis with immunofixation.
Quantification of IgM, IgG and IgA.
Blood specimens for CA and immunoglobin analyses must be
kept at 37 degrees C from sampling until serum has been removed from the clot.
Immunofixation should be performed even if no monoclonal band is visible on
Procedures: bone marrow
Trephine biopsy ( including immunohistochemistry)
Flow cytometry of aspirate
Morphology and immunohistochemistry of trephine biopsies
should be assessed by an experienced hemopathologist
professionals say that people with autoimmune conditions SHOULD NOT get
inoculated with any live vaccines such as the Shingles Vaccine.
Everyone who is
able, should get the annual flu vaccine which is a deaden virus.
We suggest wearing a Medic Alert
bracelet or necklace at all times.
Keep in close
touch with your doctor and get blood
checks as directed.
consider moving to a warm climate if at all possible.
Please use the
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suggestions with us.