In this I wish to follow up on some of the suggestions
that were made in the previous newsletter (1998). Holidays are extremely
beneficial. They will only be fun, however, if you plan carefully and
avoid things that may cause the onset of lymphoedema (if you have a limb
"at risk") or prevent worsening of an already existing condition.
TRAVELLING AND HOLIDAYS
Before leaving.
1. Check with your doctor that you have enough prescription drugs
(if you need them) to see you through your holiday. Get them filled by
your pharmacist before you leave, however, carry the scripts with you
in case of mishap, or for checking by foreign Customs Officers (which
may happen).
Ask for a prescription for antibiotics as a precaution if you
do get an infection, and carry them with you. (Penicillin is the one of
choice, unless you are allergic to this). If you are travelling to a tropical
country in the wet season, where filariasis is endemic, take D.E.C. with
you. Take one dose/week. If you feel ’flu-like symptoms after taking it
lasting for 24 hrs., then take another dose the following week etc.
2. Buy a top quality sunburn cream SPF 20-30+. Remember you can
get sunburnt through a compression garment, especially the synthetic fabric
makes. Take moisturising lotion and body wash -mineral-oil based.
(not soap)
3. Travel Insurance (that covers health as well as luggage) is
worthwhile providing you read the small print. You may have to state that
you have a pre-existing condition to claim payment if you need treatment.
(This may need to be signed by your Doctor.)
4. Buy some insect repellent, and take something to treat stings
if you do get them. A good perfume seems to work as well as repellent
- buy some duty free!
5. Pack some antifungal powder and use it, especially between
the toes! This may only be a prophylactic measure (to prevent infection),
but hotel bathrooms, pool areas and warm moist climates in particular,
can lead to the onset of tinnea (Athletes foot). This can be easily transferred
to the groin or under the breast fold areas, especially when lymphoedema
is present. Apart from inflammation, it also causes breakdown of the skin
so that bacterial entry is facilitated, which may lead to bacterial infections.
This powder may also need to be "puffed" into your shoes especially
if you are wearing sneakers or boots.
6. If you need vaccinations, do not have them in the affected
limb! Sometimes you get a reaction to these, so if possible have them
at intervals, if you need more than one.
LUGGAGE
1. Cases. For flight take a small and as light a case (or
two smaller ones if need be) as possible, unless you are travelling with
someone who can carry it for you. A case with wheels is advisable (but
you can only manage one)! If you are by yourself, get a porter to help
you if one is available. I know this can be expensive in some airports
but if it means you have a safe and happy holiday it may be worth it!
Don’t remove a case from a luggage carousel with a lymphoedematous arm.
If you have a lymphoedematous leg/s, be careful not to bump them when
you remove luggage from the carousel or when you try to load cases onto
a trolley. Try not to let someone run into you from behind and cause damage!
I know this is often difficult in big airports, but it is better to stand
back and let impatient people get their luggage first than to risk damage!
2. Hand luggage. Realise that you really do not need much, even
when on long flights e.g. a sweater, a book, minimal makeup and a change
of shirt or blouse in case something gets spilt on you during travel!
Don’t carry this with an affected arm! Include your travel documents in
this rather than carry a separate bag. Carry your medication with you,
or at least enough to last you for a few days.
3. If you are going to a holiday home by car, please get someone
to help you move cartons (of food etc.), or anything that is heavy. Onset
of lymphoedema has often been triggered by this situation. Get help also
loading and unloading pre-bought supplies from the supermarket etc.
4. Clothing. Clothing for travelling should be light, loose and
non-constricting, especially around the waist (or under the breasts).
Be careful of belts and jewellery. Clothing should preferably be layered
so that you can remove a jacket if you are going from a cold to a hot
climate or vice versa. Wear comfortable shoes. If you have lymphoedema
of the leg/s it would be better not to remove them during travelling.
Don’t travel in short skirts or shorts if you have lymphoedema of the
leg/s - infection can be easily picked up from the aircraft seats.
5. Compression garments. Check that these are in good condition
before you leave. If you have an old one, take it as a back-up garment
in case something happens to your good ones! If you have been wearing
a sleeve that stops at the wrist or stocking that leaves the toes exposed,
then a glove on the hand is necessary during flight and it would be a
good idea to bandage the toes and any exposed foot area before donning
the stocking.
6. If you are travelling in some countries e.g. China, realise that the pressurisation in aircraft is not necessarily of the same standard as in International Aircraft Companies. As an extra precaution you could
consider taking a blow up "splint" which one patient used most
successfully in place of a garment under these circumstances. She said
this got "very tight" during flights, but she returned without
any onset of lymphoedema. The alternative is to wear two garments - one
over the other- or to bandage as well as wearing a garment, if you can,
to provide extra pressure. If you are bandaging, remember to pad at the
back of the knee for comfort and to stop chafing and also around the ankle
with leg lymphoedema and at least in the elbow fold with arm lymphoedema.
BOOKING THE TRAVEL
1. If travelling by air, some airlines may still allow you to
request an emergency exit (or a bulk head seat). This means that
your "light" travel bag can be used as a foot rest in front
of a much larger space! Economy classes put seats so close together these
days that someone with long legs often cannot sit with their feet properly
on the ground or foot rest. This is dangerous, not just for patients with
lymphoedema, but also can cause D.V.T. (deep vein thrombosis) when this
position has to be maintained for many hours. Consider an up-grade to
Business Class (?) even if it means a good holiday every 2 or 3 years
rather than one each year!
2. If the flight is a long one, try and arrange a "stop-over"
for 1-2 days on the way. Some airlines include this as part of their package.
3. If a long bus-trip is being booked, choose one with as many
stops as possible and get out and move when these occur! If you have a long car trip then you can stop frequently and have a 5 minute
exercise break! Remember to protect your limb from the sun with a white
cloth or shirt etc. if you are sitting on the sunny side of the vehicle.
If, on a bus, work out which side the sun is going to shine on the bus
and request a seat on the opposite side.
4. If going to a Ski resort or mountains realise that the lowered
atmospheric pressure as you ascend can either trigger or worsen lymphoedema.
Take the same precautions as you would during flights, (or watch the limb
carefully) and apply pressure as needed.
DURING FLIGHT
1. Keep your seat belt loosely fastened so that you have room
to move as much as possible, except during take-off and landing or during
real turbulence, when it should be properly tightened.
2. Get up and move around as long as the "fasten-seat-belt"
sign is not alight.
3. Exercises and self-massage can be done whilst seated. Shoulders
can be rolled and breathing exercises done. Appropriate nodal clearance
e.g. under arm and/or in the groin as is appropriate for your situation,
and then trunk clearance towards these nodes, with light stroking towards
them, can be done, especially under a blanket which is supplied during
flights. Feet can be flexed and pointed and ankles rotated, as can be
fingers and wrists.
If you have lymphoedema of the arm you could take a ball to squeeze,
or clench your fist and twist your arm outwards and inwards much like
you would "wring" a wet towel, with your arm above your head
if possible. If you stop on a longer flight and are allowed to enter the
terminal, get out and walk around.
During long bus trips
The same applies to these as to aircraft flights.
Entertainment
Watch a funny movie whilst travelling if it makes you laugh -
this is good exercise -and it will relax you which means better flow of
lymph. I suppose that one that is exciting so you tense, and then gets
hilarious, so that you relax and laugh (which means breathing and exercise)
is the best of all!!
WHEN YOU ARRIVE
1. Do not remove your garment for a few hours or until you reach
your hotel etc.
2. Then have a cool shower and a rest with the affected
limb elevated. Use a "Body Wash" -(mineral-oil based cleanser)
and then a good moisturiser on the affected limb particularly.
3. Some more exercise would be good at this point!
4. Wash all your travelling clothes (or dry clean) before wearing
again.
5. Then start to really enjoy your holiday!
DURING THE HOLIDAY
1. Many of the above points still apply.
- Avoid sunburn
- Avoid insect bites (especially
spider bites)
(iii) Don’t overdo sports that you are not
used to. Be wary of the more strenuous excursions that may cause trauma
(or bumps and stress) to limbs.
(iv) Beware of fungal infection (tinnea) (see
p.1)
(v) Wear buckle-up plastic sandals if you
have lymphoedema of leg/s, if on the beach or paddling. If on a coral
beach or snorkelling near coral, be extra careful. Coral infection can
cause lymphoedema in people with normal limbs.
(vi) Use a good skin moisturiser.
(vii) If it is hot, realise that you can cool
your limb with your compression garment on just by wetting it! Put your
limb under a tap or shower! Evaporation will then cause cooling!
(viii) Be careful shaving, pushing back cuticles
etc.- the general "Do’s and Don’ts" (see previous newsletter
or Information Book).
(ix) These are just general precautions when
travelling, and although particularly applicable to a person with lymphoedema
basically apply to every member of your families as well! A lot of it
is good common sense! Holidays are a time for enjoyment, but also give
you extra space to pamper yourself. Relax and do it.
Try and do all the things that you want to
do. Take what simple precautions that you can - and have a wonderful
and safe holiday.
Why do aircraft flights trigger the onset or worsen already existing
lymphoedema?
This first came to my attention in 1995-1996 when I had about 12 telephone
calls in a 3 month period from patients who had developed lymphoedema
(suddenly). When I asked for some case history, or the information was
volunteered, most of these were post-mastectomy or post-pelvic cancer
patients and had undergone a long flight when they felt better and they
and their family needed a holiday. The limb had "blown up" during
the flight, which situation was of course, a disaster for a happy holiday.
This situation had not previously been published in the general literature
and it is only that in Australia which was so far from most destinations
that our people usually travel to, that it became obvious to me that it
needed further explanation and a warning sent out for "travellers
at risk".
The figures reproduced below give some idea of the risk the patient is
at. We were not, however, able to determine what length of time needed
under lowered atmospheric pressure to produce the onset of lymphoedema.
However, they must have had latent but not detectable lymphostasis. It
would seem to me to be sensible to use the prophylactic measure of wearing
a compression garment with either a gauntlet or glove. If I had a "limb
at risk" and I would certainly do so.
The results of a patient questionnaire sent out in the 1993 Newsletter.
This has already been reported and published in The Journal of Aviation,
Space and Environmental Medicine, Vol. 67, No. Jan 1996, J.R. &
Judith R. Casley-Smith, p52-56.
The pertinent points recorded below are the results of these questionnaires.
1,020 were sent out to patients, 749 replied, with 531 answering the questions
about what triggered lymphoedema. We could eliminate the 41 patients that
had had lymphoedema since birth. There were 490 patients who answered
(163 postmastectomy, 136 primary and 191 secondary leg lymphoedemas).
In 27 of the 490, it started during an aircraft flight (15 legs
and 12 arms) In addition, flying caused lymphoedema to worsen in 23 arms
and 44 legs in the respondents (some of whom volunteered this information).
Other triggers of onset were 9 patients - a long bus or
car trip and 454 from another trigger - 10% from trauma (including bites
and burns) 20% from the date of surgery and/or radiotherapy and 40% from
no identifiable cause. It is important to note that in the onset of lymphoedema
with those dating it from a car or bus trip all now have lymphoedema of
the leg only. Since then, we have had many more examples of the problems
caused by lowered atmospheric pressure. One study done since this publication
by a researcher in Western Australia (W.A.) showed a much higher incidence
of onset caused by flying. It should be realised that flights from Perth
(W.A.) to the Eastern States (e.g. Sydney or Melbourne) are much longer
than many local flights (5-6 hrs vs. 1-2 hrs.).
However we have had patients contact us who have simply ascended mountains
e.g. to ski resorts and the reduced atmospheric pressure has been enough
to trigger onset of lymphoedema (they were not skiing). Conversely we
have had scuba divers who have lymphoedema say how much this helps then
with reduction of swelling and that the effect can last for several days.
Of course there has been a lot more feedback since this study was first
completed. I think, however, it is the only one of its kind and worth
taking into consideration.
It may be interesting for you to read some typical case studies.
1. A patient had a mastectomy
2 months before a flight from Australia to London (which she took to recover
from her distress at her condition and its treatment). She had no sign
of lymphoedema after the operation or before the flight; during the flight,
she developed considerable lymphoedema. This remained and increased thereafter
for the next 6 years (when she replied to the questionnaire).
This patient had a typical "limb at risk" of developing
lymphoedema. This occurs, to varying extents, after some 30% of mastectomies.
2. A man had mild primary
lymphoedema for 20 years. During a 2 hour flight it became considerably
worse and has remained so for the last 5 years.
3. A patient with Grade
2 postmastectomy lymphoedema of 5 years duration flew (USA to Europe)
for a lymphatic transplant. The operation was successful and the edema
was greatly reduced. She was fitted with a compression garment, which
did not include the hand. The arm was stable at this new size for 4 weeks.
During the return flight (7 hours), the hand swelled and was very painful,
so she removed the garment. On arrival, the entire arm had swelled and
the garment was far too small. The edema was as bad as before the operation.
It gradually worsened over the next 2 years (to the time of her reply).
Apart from the effect of flying, this case emphasises the necessity
in many patients of a compression glove or gauntlet being worn as well
as a sleeve. Had one been worn, it is unlikely that the hand would have
swollen
4. A woman with post-surgical
lymphoedema of the leg flew from Australia to China for heat treatment
with microwaves. She was so pleased with the result that she bought the
apparatus to continue the treatment in Australia. This treatment is always
followed by fitting compression garments or wearing bandages, but for
some unknown reason, this was omitted. While flying back to Australia
(11 hours), her leg swelled so much that she was quite unable to place
it in the apparatus again. (It had, of course, fitted when she first arrived
in China, so the edema was much worse than before).
This case shows, not only that limb volumes are very volatile after
rapid reductions, but that (at least after the microwave heat treatment)
the interstitium can be stretched even further by edema. This did not
happen on the flight to China when the oedematous tissues were more stable.
5. A patient who had a mastectomy
15 years earlier, with no subsequent sign of lymphoedema, flew from Adelaide
to Sydney (90 minutes). Her arm started to swell during the flight. She
had chronic lymphoedema from then onwards (5 years at the time of responding).
This case shows how long a latent period may last, yet lymphoedema
was triggered by a short flight.
We know that prolonged lack of movement (such as at night) will decrease
the uptake of fluid and protein by the initial lymphatic vessels. We also
know that most people get "swollen ankles" and feet on long
aircraft flights. We know that the air-conditioning in aircraft has a
dehydrating effect, (as does excess alcohol!) and that this should be
replaced by drinking extra water! However water retention occurs in people
with normal lymphatic drainage, and urination usually increases when the
passenger disembarks and the body tissue gradually recognises and can
adapt again to its normal pressure.
It was postulated in the above paper, that the lowered cabin pressure
in aircraft allowed the fibrotic capsules" - in the tissue spaces-
to become rounded, and thereby compress and distort the adjacent lymphatics
and surrounding tissues, and the inlet valves of these initial collectors,
which may result in reduction of the remaining lymphatic drainage.
The "normal swelling" during flight would have stretched the
fibrils which hold tiny lymphatic junctions open and thereby prevented
their closing and refilling. Exercise will help this filling, help to
push lymph into the collecting lymphatics and help them to pump, which
is why it is so important under these conditions.
Drainage may have already been compromised but just still have been able
to function due to the body’s own safety mechanisms. That is, lymphoedema
was not clinically apparent, but some pathological changes had already
occurred in the tissues. This is referred to as the "latent phase"
of lymphoedema. The flight, with loss of normal pressure or lack of movement
and the legs in a downward position, may have been all that was needed
to trigger the onset or worsen the already existing lymphoedema.
BANDAGES
1. I am delighted to announce
that an absolutely wonderful bandage winder is newly available.
This was designed and made by Ken Retallick. We have trialled 4 different
models over the last 8 months to improve the original design. These are
extremely durable (made from stainless steel), very easy to use and a
bandage can be wound in about 30 seconds! All types and sizes of bandages
can be wound with this machine. Correct tension is very easy to obtain.
This will save a lot of tedious hours of work and each clinic should have
one! Patients who bandage at night will find these ease the burden of
winding considerably. See P. 15 for more information.
Ten important points about bandaging:
1. If your limb reduces
at night, then you do not need to wear compression. However, this is not
advisable until 6-9 months after treatment (especially if you have had
a good reduction) until the limb has had a chance to remodel.
2. Bandages are more comfortable
than garments at night because they are less elastic and therefore have
a lower "resting" pressure.
3. Bandages, if not correctly
applied, with pressure evenly graded from higher distally (from finger
and toes) to lesser proximally (at the upper part of the limb), will cause
further problems and damage. If this is hard for you to achieve, then
it is better to wear a garment rather than to bandage incorrectly.
4. For protection (against
chafing), and comfort, padding should be used e.g. behind the knee and
at the ankle, or in the elbow and either in the palm or at the back of
the hand and wrist. Your therapist will help you with this. Toes and fingers
should be bandaged first if necessary. A thin sleeve or stocking should
be worn next to the skin so that this can be washed daily and roll-on
padding (see below) applied over this. Only then should the low stretch
bandage be applied.
5. Low stretch bandages
should be washed frequently, not just for hygiene, but to help them maintain
a certain elasticity and therefore contour better around the limb.
6. Moisturiser should always
be applied to the limb before bandaging!
7. Remember that there are
adjustable garments (Circ-Aid, Arm/Leg Assist, Reid Sleeve) that will
save you the time and effort of bandaging if you wish. (See last newsletter
or information book). Although they are more expensive than bandages,
they last a lot longer and are therefore economical in the long-term.
The latter two are rather bulky, but some patients are finding them a
great help.
8. The number of bandages
will vary according to individual needs. For the outer low-stretch bandage,
usually 1 x 6 cm, 1 x 8 cm and 1 x 10 cm will suffice for the arm and
1 x 8 cm, 2 x 10 (or 3 x 10 cm) and 2-3 x 12 cm will be adequate for the
leg. This of course depends on the size of the limb.
9. Some bandages are considerably
cheaper than others. I suggest you check with suppliers before ordering
them. Therapists may also be able to obtain them for their patients at
a better rate. The technique of bandaging requires knowledge and skill,
especially for lymphoedema. Patients should not attempt to do this themselves
unless adequately instructed and helped by their therapist.
10. The order of bandaging is:
(i) Fingers or toes.
(ii) Tubular stocking/sleeve
- over the whole of the limb.
(iii) Padding over whole of
limb (plus foam padding where necessary).
(iv) Low stretch outer bandage
- over whole of limb. Use tape for joining the end of one bandage to the
next.
(v) Joined low-stretch bandages,
around abdomen - if necessary
(vi) Use Handygauze Cohesive™ or Surgifix™ (B.D.F.) (or e.g. bicycle pants) if there is trouble
keeping the bandage up or to stop them rolling or falling down at the
top.
There is a product available from the United States called the Legacy Directional Flow Compression System. Therapists have been trying
it out in a variety of ways to see how it can best work for people with
lymphoedema. The most effective use at this point is as a replacement
of the extensive bits and pieces of padding used under a low-stretch gradient
compression bandage. It has been very helpful in breaking up fibrosis
and softening hardened tissue, and is much easier to use than the separate
pads and foam pieces that a good lymphoedema therapist usually custom-makes
for each individual patient. The Legacy is not a compression garment
and should be donned over stockinette. More information about the Legacy
can be obtained from Product Information, Legacy Compression Systems Inc.,
1800 NW Market St., Seattle WA 98107-3908, USA. Fax (1)-206-782-2079,
phone (1)-206-782-8554.
A list of bandage suppliers can be
found here:
THE BENZO-PYRONES
These are still available world-wide. It should be emphasised that each
different benzo-pyrone (which are the vitamin P group) have different
metabolic pathways, i.e. they are differently metabolised by the liver.
Coumarin is the only one to have shown any adverse side effects
(3 probable deaths in 10,000 patients). If you have been taking this for
more than 9 months, there should be no cause for concern. No adverse reaction
was reported after this time and it means that you have normal coumarin
metabolism. If you wish to start using this, then a blood test for liver
function enzyme levels is recommended before you commence and on a monthly
basis up to 9 months. If this goes over 3x the base limit, then be very
careful or cease to buy them If any hepatic reactions occur, e.g. jaundice
(yellowness), then stop immediately. Please realise that many other drugs
also raise liver enzyme levels and some can cause liver damage e.g. Paracetamol
and Isoniazide. In Australia, Paroven™ (Venoruton™ in Europe) is available
without a script, as are many bioflavinoids. The "new" drug
for "cellulite", Cellasene™ contains a mixture of different
benzo-pyrones. A lot of the fat in cellulite or lipodema is stored in
overloaded macrophages (tissue cells). When these cells are reactivated
by the benzo-pyrones, they lyse the excess fat and are able to then lyse
fat stored in the tissues, thereby allowing flow of lymph through the
tissue spaces. People with lipodema particularly, plus overlying lymphoedema
(due to tissue channel blockage) have been greatly helped by coumarin.
They have reported an immediate and large increase in weight since its
withdrawal from the Australian market. The problem with the other benzo-pyrones
lies mainly in their cost, and the much larger doses that are needed in
both lymphoedema and lipodema because they are large molecules rather
than small as is coumarin, and are patented. Since the last Newsletter,
Pharm Products has changed its email address, and the details are as follows:
Lypedim™ (200mg. coumarin) tablets:
Pharm Products, Private Ltd., "Vijai", Medical College Rd,
Thanjavur 613007, Tamil Nadu, INDIA; fax: 91+ (4362) 31650; tel: 91+ (4362)
39176, e-mail; pharm@md3.vsnl.net.in Chennai office: Fax 91+(44) 6211939; Tel: 91+(44) 6216635; email: ppplm@md4.vsnl.net.in
Other uses of benzo-pyrones
Benzo-pyrones are so useful in lymphoedema, for which there is no other
effective drug, that it is often ignored that they are also reduce many
high-protein oedemas (i.e. protein concentrations of 1 g/dl or more).
These include almost all oedemas except those from renal or cardiac failure.
These drugs never, of course, attack the underlying cause of the oedema.
However they stimulate the macrophages to lyse more of the excess proteins
in the tissues than they usually do and greatly increase their numbers
at this site. This reduces the oedema (since the no-longer-retained water
returns to the blood), improves the oxygenation of the tissues, and their
cellular functioning and wound healing. They provide a local alternative
pathway to the lymphatic system for the removal of excess protein and
its associated oedema. Many clinical trials and animal experiments have
been performed on a wide range of such oedemas, showing their worth.
Benzo-pyrones can treat the symptoms of high-protein oedema wherever
they arise, e.g.
- Oedema due to accidental trauma
of all kinds, e.g., burns, crushing and cutting injuries including infected
wounds (unlike the corticoids), bruises and deeper haematomas, contusions
& fractures.
- Oedema due to surgical trauma
(particularly important where surgery may involve damage or removal
of part of the lymphatic system, e.g. skin grafts). They may also assist
where surgery produces no damage to the lymphatics. It may be given
three days prior to elective surgery.
- Oedema due to sports injuries
and industrial injuries and strains.
- Oedema due to infection where
benzo-pyrones can reduce swelling while an antibiotic treats the infection
(unlike the steroids, it does not interfere with the inflammatory process).
- Chronic venous insufficiency
(including ulcers and haemorrhoids).
- Swollen ankles of the aged,
when the skin is stretched and fragile.
Finally, and of considerable importance but with only incomplete evidence,
is the likelihood that the benzo-pyrones also stimulate the immune functions
of macrophages against certain forms of carcinoma (e.g. melanomas and
even carcinomas of the breast). If correct, this could be of great value.
For other suppliers of benzo-pyrones, see last years newsletter or your
information book.
ITEMS OF INTEREST
Gloves
If your hand swells when you walk you may wish to consider extra compression
in the form of a Vikora glove (one turned inside out with the other one
over the top) works very well. You could also squeeze a soft ball whilst
walking. These gloves have also been found to help rheumatoid arthritis
in conjunction with the prior use of a heat mitten, to alleviate morning
pain and stiffness. This treatment did not, however, significantly affect
grip strength. It would be worth considering this regime, for people with
this condition, who have to put on garments, as it may make it easier
for them to do so without outside help. Grip strength may be able to be
increased when stiffness is alleviated by the squeezing and releasing
of balls, as general non-use of the hands is likely to have caused weakness
and muscle wastage..
(Benzo-pyrones also help considerably in reducing the inflammation associated
with arthritis and they work at half the dose recommended for lymphoedema).
Vikora also make gloves for children and as children wear out gloves
so fast this may be a cheap and suitable option (Children’s gloves come
in sizes 4-7 years, and 8-12 years) and there is a hand measuring (outline)
chart available for adults. These gloves are very inexpensive. The fabric
is very soft and comfortable, and made in Australia!
Vikora gloves are obtainable from Vikora, PO Box 13, Rose Bay, NSW 2029,
Australia; (1800) 242 957, (02) 9337 2411; fax (1800) 679 777, (02) 9337
5416; email: vikora@geko.net.au;
CONFERENCE REPORTS
The most important conference this year, from the point of view of members
of the L.A.A. was the XVII International Society for Lymphology Congress
held in Chennia (Madras), India, in September. It was wide-ranging in
scope and included major sessions on basic cell and tissue biology, pathophysiology,
microcirculation and immunology including HIV/Aids and the lymphatic system,
angiodisplasias -classification and genetics, conservative and surgical
treatment of lymphoedema and imaging of the lymphatic system. It also
dealt with a holistic approach to treatment of lymphoedema, the importance
of skin care, the use of prophylactic antibiotics and exacerbating factors
given the socio-economic variance and treatment within both specific and
wider areas. There was a session on the up-date of the Consensus Document,
(of which I was a member of the panel) including points to be considered
on the refining of protocols of treatment and classifications, and the
need for detection of the latent phase before lymphoedema becomes clinically
detectable.
A workshop was held at a public hospital, where Dr. E. Foldi and I showed
treatment of filaritic elephantiasis by lymphatic decongestive therapy
and skincare. Demonstrations of the use of bandaging, surgery and pumps
in the treatment of filaritcic lymphoedema were also shown.
Neil Piller, from Australia, presented two important papers, one on the
results from the first 122 patients who had participated in partner/carer
training and one on a study of 135 patients in which tonometry and bio-impedance
were used as early detection tools for lymphoedema.
I also presented two papers, one on the multiple uses of the benzo-pyrone
drugs with particular reference to their application in India, based on
the trials that we, with Jamal did, in the treatment of filaritic lymphoedema
both in India and in China with Chang et al. and Wang et al. The first
two of which were funded by the W.H.O. The other was on the management
of lymphoedema in India - a suggested protocol for prevention and treatment,
some of which I have briefly outlined below.
Most important were the sessions on Lymphoedema caused by Filarial
Infection and the control of this and the vector (the mosquito) within
the population.
Filarial lymphoedema and elephantiasis are caused by a mosquito carried
parasite which grows into a worm that lives in the lymphatic system. These
worms damage the lymphatic valves and lining (endothelium) so that these
no longer work as well as they should, and when they die (4-6 years) or
even prior to that when they form "nests", which can block the
lymphatic drainage. D.E.C. (di-ethyl carbamazine), which kills the microfilaria,
causes a breakdown resulting in the release of "foreign" protein
into the system. This causes fever and general inflammation which can
worsen the condition of lymphoedema. Both lymphoedema and lifestyle e.g.
working or walking without shoes, leads to damage and infection which
again worsens the lymphoedema, as does the continual reinfection of the
parasite by the mosquito.
If you want further information on this, look at http://www.who.int/iof-fs/en/fact102.html.
As we first started work with Dr. Jamal and the W.H.O. in 1982, the enormity
of this problem came as no surprise to me. However, it is salutary to
realise the huge problem faced by the Health Authorities in India and
World Health Organisation. Only about 2% of the people in some Indian
states (which are affected with this problem) pay taxes. 75% of the population,
or more, may be carriers of filariasis. The same is true for many of the
endemic population of the world - mostly tropical, very poor and underfunded
countries, which have to deal with this problem. The number of cases in
India with lymphoedema, elephantiasis and hydrocele (swelling usually
in the genitalia) is estimated at 21 million people. Lymphoedema in these
cases is almost invariably associated with repeated episodes of infection.
Ostrisization is common, partly because of this (i.e. infection smells).
Legs, arms, trunk, genital areas can be affected causing rejection from
family members. If one cannot work, one often cannot eat. The problem
is huge, but the answer lies in the eradication of microfilariae in the
existing population, mosquito control programs and the prevention of recurrent
infections. Pilot programs are already being carried out with success
in some villages e.g. D.E.C. in the salt (which kills the microfilaria).
This program, along with spraying for mosquitoes, did a very good job
in Shandong Province in China, where the rate of infection dropped from
20-30% to 0.01% in 30 years. However, D.D.T. was used in the sprays, which
had an adverse effect. Health Aide workers are also being trained to massage
and teach self-massage and care.
It must also be realised that people suffering from this disease want
an immediate "cure". Coumarin (a benzo-pyrone) which we trialled
in India and China, did work and is cost effective, especially over an
8 year period, but it is slow for elephantiasis. Surgery often needs to
be repeated, and is not cheap, nor available to everyone. Good garments
are available, which are cheap by Western Standards, but not for the poorer
population in India, as are bandages. However, they are seldom practical
in a rurally based community.
Added to the burden of filarial lymphoedema are, of course, the usual
lymphoedemas that the rest of the world suffers from e.g. post-mastectomy,
post-pelvic cancer, primary lymphoedema, angiodysplasias, and traumatic
(e.g. from accidents, burns etc.), and this is a large number in India.
The Commemoration Panel dealt with wishes for Lymphology for the next
Millennium. Everyone had different points of view to offer. A few of my
particular points were recognition of the numbers of people a) with lymphoedema,
and b) with high-protein oedema (based on figures available from our local
public hospitals and extrapolated from 1980 onwards): i.e. it would seem
that the total numbers of lymphoedema due to filarisis are over 120 million
worldwide with 40 million seriously incapacitated. Post-mastectomy lymphoedemas
equal ~45,000,000, primary lymphoedemas 3-30,000,000, and other secondary
causes - at least 45,000,000. When added to the other cases that we recognised
as causing a high-protein oedema, e.g. inflammation, accident, surgery,
C.V.I. lipodema etc.), lymphoedemas and high protein oedemas may equal
almost half of the world’s population. Although the acute oedemas will
subside given time, if they could be treated, length of patient stay in
hospital and risk of infection could be minimised and be a more cost effective
way of dealing with the situation. It is a pity that our governments see
fit to neglect this important aspect of treatment and healing, and that
the situation in many countries is declining rather than improving.
My wishes for the future of lymphology on the Commemoration Panel also
included:
(i) Determination of those
at risk after cancer operations and radiotherapy,
(ii) Genetic prediction and
mapping,
(iii) Early detection and
education in preventative measures,
(iv) Better and earlier education
in all aspects of lymphology both at the undergraduate and postgraduate
level,
(v) Educational "hand-outs"
for G.P’s, specialists, physicians, surgeons and radiotherapists on a
world-wide basis - perhaps geared to their different parts of the world
- for both diagnosis and treatment (dependent on available treatment options),
(vi) Furthering the desire
and enthusiasm for research into lymphology in young scientists,
(vii) Better accreditation procedures and training of more therapists,
(viii) Recognition of preventative measures,
(ix) Increased psychological
support for those with lymphoedema,
(x) Standardisation and improvement
of diagnostic facilities,
(xi) Control of secondary
infections in Lymphoedema,
(xii) Better operative and
better radiotherapy procedures,
(xiii) Immunological advances.
Most important is the recognition of the number of people with lymphoedema,
and that adequate public (or private) treatment should be available to
all.
Saskia Thiadens has kindly permitted me to use the editorial she has
just written for the N.L.N. which, although it repeats a number of things
I have said, gives a very valuable and different viewpoint; and provides
an excellent contrast to my report above.
Overview of the XV11 International
Congress of Lymphology, Chennai, India
Discovering The Unrecognised Epidemic: Filariasis
As the Executive Director of the National Lymphedema Network, I recently
attended the 17th biennial ISL Conference which was organised in Chennai
(formerly Madras) in Southeast India (September 18 -25,1999). Originally,
I was sceptical and concerned about travelling to this underdeveloped
part of the world, partly due to the "unknowns," as well as
the possibility of becoming sick. I am delighted to say that this was,
and will continue to be, a life-changing experience for me in many ways.
It took over 24 hours to travel from San Francisco via Hong Kong, Singapore,
across the Sea of Bengal, eventually landing in Chennai, the third largest
city, in southeast India.
Three hundred and fifty scientists, medical doctors, surgeons, diagnosticians,
therapists and other delegates from 28 countries attended. The Congress
was officially opened by the State Governor, Fathima Beevi, former Judge
of the Supreme Court of India, as well as Arcot Veeraswani, the Minister
of Health. It was Professor Ethel Földi, the President of the ISL, and
Dr. Manokaran, the 1999 ISL Program Director, who formally organised the
Opening Ceremony. Many local and international lymphologists and other
related celebrities/dignitaries participated. We also were fortunate to
observe the beautiful dancing and music by local natives, a real treat!
The majority of delegates were Indians, which greatly interested me,
especially since a large area of concentration at the meeting and in the
papers presented was on the huge Filariasis epidemic seen in many areas
in India and other underdeveloped countries. As the founder of the NLN
(established in 1988), and heavily involved in the world of lymphology,
I really believed that I had a fairly good grasp on the known causes,
types, and related conditions affecting the lymphatic system. But I was
wrong. None of us trained and educated in the lymphatic system and living
in the Western countries really are aware of the impact and incidence
of Filariasis around the globe. I was absolutely stunned by the presentations,
slides and information provided by the Indian professionals, most especially
by the lack of attention and information provided to the general public
for a condition that, in many cases, could be completely avoided with
early detection.
We visited a public hospital in Chennai, and all of us were speechless.
The conditions were horrifying: huge wards with dozens of patients mixed
together, old and young men and women. No sterile techniques were practiced,
the rooms were dirty and stale, without air conditioning (the weather
was very warm). Visitors often stay overnight and eat on the floor next
to the patients’ cots. At the same time, there was a deep sense of camaraderie.
Clearly people and families take care of each other, constantly smiling
and expressing their gratitude. We saw a number of patients with filariasis,
some quite young with very large legs, as well as young parents with babies
who had serious angiosdysplasias. The sad part was that most of these
patients were not receiving treatment due to the severe poverty.
Brief Introduction to Filariasis
Filariasis in humans is caused by a lymphatic-dwelling nematode (worm)
parasite Wuchereria bancrofti. The disease is an important public
health problem in many areas of the world, and the second highest cause
of disability. According to the World Health Organisation and the Department
of Public Health in India, it has been estimated that in that country
alone, approximately 7.8 million cases of lymphedema/elephantiasis and
12.9 million cases of hydrocele have been diagnosed, with more than 31.3
million people currently carrying the parasite (microfilaria). India carries
over 43% of the world’s filariasis burden, and the condition has tremendous
social and economic impact on individuals, families, and communities.
The average person in India living with this condition experiences approximately
4.2 acute attacks and loses an average of 30 days of work per year (for
middle-aged patients). Also the productivity of lymphedema patients is
significantly lower compared to healthy people. In India, the control
strategies focus on transmission control either by chemotherapy or by
vector control. Overall, filariasis and morbidity control have received
little or no attention.
The most amazing and frustrating fact is that if the general Indian population
were informed about the condition, appropriately counselled, provided
with annual testing and treatment, if indicated, this epidemic could be
greatly diminished.
Who are the Carriers?
In an endemic area, while everybody is exposed to mosquito bites, only
some become infected. Of those infected, some do recover, but in others
the parasites grow through different stages, eventually maturing into
adult worms. The mature worms of both sexes lodge themselves in the lymphatics
where they mate and produce large numbers of microfilariarae (mF). The
mF most often attack during the night, causing severe symptoms, but the
majority of those infected remain asymptomatic. Incubation time is approximately
5.4 years and mF carriers do not always present clinical manifestations.
Subsequently, those who carry the parasite but have not been tested are
at high risk of developing full-blown filariasis at some point. Since
most Indians are unaware of the condition, and have little or no money
for testing, most severe cases are seen in the poor population.
Acute Filarial Disease
Depending upon the clinical signs, the disease is described as acute,
chronic, or allergic in nature. Acute includes:
a. Filarial fever
b. Epidiymo-orchitis
c. Lymphangitis
d. Adenolymphangitis
(ADL)
and includes, pain, tenderness, redness, localised swelling and warmth,
fever, nausea, vomiting. ADL attacks occur periodically, mostly in patients
with pre-existing lymphedema. The pathogenesis of these attacks is not
well understood.
Hydrocele
Hydrocele is most commonly seen in the male population. The parasites
are lodged in the testicular lymphatics, resulting in fluid accumulation
and subsequent hydrocele. For unknown reasons, ADL is rarely seen in these
patients, and the progression seems to be a passive phenomenon (but if
it occurs may present a great psychological problem in the patient).
As a result of the prolonged presence of worms, lymphedema usually is
seen in lower extremities, rarely in upper, sometimes in the female breast.
Management of Filariasis
Management depends upon the infection status, and its complications.
Options include:
- For microfilaria carriers:
diethylcarbamazine (DEC). This is the drug of choice for treatment of
mF carriers.
- Complete Decongestive Therapy
( rarely available).
Conclusion
Over the last decade in the Western world, we have made notable progress
in creating awareness about lymphedema, the lymphatic system, and other
related conditions. But I have come to realise that we have barely touched
the surface of this complicated system, and have much to learn about the
overwhelming epidemic of filariasis around the world. The time has arrived
for us (Americans, Australians and others) to assist the medical professionals
in India in educating their citizens, and treating and supporting the
millions of people currently living with the condition. In addition, we
need to support the establishment of protocols through routine blood work/exams,
and educate doctors and therapists. Most importantly, there is a great
need to educate the general Indian population in basic health and hygiene,
including foot and skin care, and to promote overall awareness of the
physical body, in a manner that will best suit the cultural climate of
this unique country.
We need to join the World Health Assembly in what it has termed the "elimination
of lymphatic filariasis as a public health problem" (1997). Realisation
of this political commitment using all the tools we have in our hands
is now our duty. The knowledge and expertise we have on the science and
art of elimination of Filariasis is our strength, enabling us to forge
ahead.
Department of Public Health & Preventive Medicine. Government
of Tamil Nadu, India, and the World Health Organisation (WHO). Contact
Judith Casley-Smith for more information
CONFERENCES FOR 2000
Third Australasian Lymphology Association Conference, Oedema -Future
directions, Melbourne, Victoria, Carlton Crest Hotel.
Dates: 7-9 April, 2000
Contact: PR Conference Consultants Pty Ltd
PO Box 2954, Fitzroy Delivery Centre 3065, Australia. Fax: 61 39419 6400
e-mail prcc@labyrinth.net.au
4th Asian Congress for Microcirculation, Bandung, Indonesia.
Dates: 25 - 27 Febuary, 2000
Contact: SECRETARIAT ACM 2000
Jl. Ciniru VI/13, Kebayoran Baru
Jakarta 12180, INDONESIA
Ph. +62-21-7211004, Fax. +62-21-7 2 10989
e-mail. Kardio@dnet.net.id
website. http://www.indosat.net.id/acm2000
G.E.L. meeting, (Groupement Européen de Lymphologie) France (Nancy)
Dates: 1-2 September, 2000
Contact: Olivier Leduc, GEL Secretary,
Service de Kinesitherapie, Univerité Libre de Bruxelles, Laarbeeklaan
103, 1090 Brussels, Belgium; fax (02) 650 2473
e-mail: aleduc@ulb.ac.be
B.L.S. Annual conference,
Birmingham, U.K.
Dates: 2-3 October, 2000
Contact: B.L.S. Administration Centre,
P.O. Box 1059, Caterham, Surrey UK CR3 6ZU,
Ph. 44(0) 1883-330253, Fax. 44(0) 1883-330254
4th NLN Conference on "Lymphoedema: Sharpening the
Focus for the New Millennium",
Orlando, Florida, USA.
Dates: 14-17 September, 2000
Contact: NLN, 2211 Post St., Suite 404,
San Francisco, CA 94115-3427
Ph. 415-921-1306, Fax. 415 921 4284
e-mail: nln@lymphnet.org
CONFERENCES FOR 2001
XVIII International Congress of Lymphology, Genoa, Italy.
Dates: 3-7 September, 2001
Contact: Congress president. Prof. C. Campisi
Central Office, Via Assarotti 46/1, 16122 Genoa, ITALY.
Ph. +39-010-8393755, Fax. +39-010-811465
e-mail. Campisi@unige.it
7th World Congress for Microcirculation, Sydney, Australia.
Dates: 19-23 August, 2001
Contact: Tailoi Chan-Ling - Chair, Scientific Program Committee
Department of Anatomy and Histology, University of Sydney, NSW 2006 AUSTRALIA
Ph: +61 2 9351 2596
Fax: +61 2 9351 6556
e-mail: tailoi@anatomy.usyd.edu.au
http://www.ozemail.com.au/~worldcongress
L.A.A. TRAINING COURSES FOR 2000
Three course are planned.
Dates:
A. Monday 6 March - Friday 17 March
B. Monday 24 July - Friday 4 August
C. Monday 30 Oct - Friday 10 Nov
These will be held in Adelaide. Therapists interested should contact
the L.A.A.
94 Cambridge Tce., Malvern, SA 5061, Australia, or fax on 08 8271 8776
or email casley@internode.on.net for details.
If therapists would like an update course would you please notify me
when you return your form. The best dates for me would be 14-16 July,
although it may be possible 20-22 October. Please specify your preferences.
This course would focus on case studies, demonstrations and problem solving
It is possible that a course will also be held in Italy in June for interested
Doctors, and therapists who are already certified as Lymphoedema therapists.
Dr. Judith R. Casley-Smith
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