Newsletter dec 2010

Life Saving Organization Pakistan Myasthenic Welfare Organisation On behalf of the Muslim Aid Khalid Mehmood Zia Founder PMWO is handing over Platelets Kits to Chief Minister Punjab for the treatment of Dengue Fever Patients. "At this occasion Chief Minister Punjab Mian Muhammad Shahbaz Sharif appreciate the great contribution of Muslim Aid for Dengue Fever patients.
The Plasmapheresis & Platelets Center of Muslim Aid & PMWO in Jinnah Hospital Lahore has been doing tremendous clinical work for Dengue Fever patients by providing free Platelets to critical patients with Dengue Fever & Cancer. Many precious lives saved with the donation of Muslim Aid" Contribution of Australian High Commission . pg 2 PMWO & its Current Activities . pg 3 A Guide to Myasthenia Gravis & its Treatment . pg 4 A Layman Guide to GBS/CIDP? . pg 5 MG and Pregnancy . pg 6 Your generosity brings us closer to a New Drug (Monarsen EN101) for MG Patients . pg 7 world without MG, GBS/CIDP Dengue Fever in Pakistan . pg 8

Contribution of Australian High CommissionIslamabad for FREE treatment of poor patients Treatment of Mr. Peter Bartlett, First Secretary Political Australian High Commission Islamabad is sharing his views to media during his poor patients. visit to PMWO Plasmapheresis Center at Allama Iqbal Medical College/Jinnah Hospital Lahore.
Australian High Commission Islamabad has donated 01 million rupees to PMWO under the Direct Aid Programme PATIENTS TREATED BY MUSLIM AID & PMWO PLASMAPHERESIS & PLATELETS CENTER AT PIMS, ISLAMABAD & JINNAH HOSPITAL, LAHORE IN 2010 (DAP) for the FREE provision of an advance health care facility of Dengue Fever
Plasmapheresis for the rapid clinical management of poor & indigent patients reported from the most vulnerable population of the Punjab through the Total Number of Patients = 1983
Total Number of Plasmapheresis = 2296
PMWO Plasmapheresis Center Total Number of Platelets = 1409
PMWO & its activitiesPakistan Myasthenic Welfare Organization (PMWO) is a registered voluntary health agency with charitable status for the diagnosis and treatment of patients with Neurological disorders (MG, GBS, CIDP and Polyneuropathy). PMWO is the only health organization of its nature in Pakistan, which has organized a comprehensive treatment of MG and GBS and dedicated to provide free treatment to poor & indigent patients including Medicines, Plasmapheresis and Thymectomy. PMWO was established in 1990.
Please help us to fight
Myasthenia Gravis, GBS/CIDP, Our vision is that every person of MG, GBS, CIDP or variants has Polyneuropathy, Dengue Fever & convenient access to early diagnosis and affordable treatments and Cancer patients.
dependable support services.
Make your donations in the name of PMWO for the better care of ailinghumanity. PMWO striving for the welfare and care of most vulnerable people of the society suffering from Neurological disorders and Bank Account of PMWO:
after treatment such people should achieve fulfillment in all Allied Bank of Pakistan aspects of their lives.
Blue Area Branch IslamabadAccount # 1283-8 2. To improve the quality of life of individuals and families worldwide affected by MG, GBS, CIDP and variants regardless of religion, ethnicity, nationality, gender or age.
Islamic Bank of Britain Coventry Road Birmingham (U.K.) 3. To find the cure of MG, GBS and CIDP through education and Account No. 01122801 research with international cooperation.
Sort Code: 30-00-83 Life Saving Projects of PMWO
Plasmpaheresis Centre of PMWO at Pakistan Institute of Medical
Sciences (PIMS) Islamabad for rapid clinical management of patients
with Neurological disorders referred from AJK, Punjab, Khyber Pakhtunkhwa & Northern Areas.
v Single Donor Platelets Service for Cancer and Dengue Fever Patients by the PMWO Plasmapheresis Center PIMS. v Myasthenic Drug Bank Project of PMWO for Poor Patients.
PMWO Plasmapheresis Excellence Centre at Allama Iqbal Medical College / Jinnah Hospital, Lahore.
v Mobile Plasmapheresis Service of PMWO to all teaching hospitals from Peshawar to Lahore.
v GBS Child Rehabilitation Center.
v Counseling and Rehabilitation Program for young MG Patients.
v Rehabilitation and support Program for Myasthenic Mothers.
A Guide to MG & its Treatment
Myasthenia Gravis (MG)
Myasthenia Gravis comes from the There are many disorders that cause Greek and Latin words meaning weakness. In addition to a complete grave muscular weakness. The most medical and neurological evaluation, common form of MG is a chronic a number of tests may be used to autoimmune neuromuscular establish a diagnosis of MG. A blood disorder that is characterized by test for the abnormal antibodies can fluctuating weakness of the be performed to see if they are voluntary muscle groups. The present. Electromyography (EMG) prevalence of MG in the Pakistan is studies can provide support for the estimated to be about 15/100,000 diagnosis of MG when characteristic population. However, MG is patterns are present. The probably under diagnosed and the Edrophonium Chloride (Tensilon) prevalence may be higher.
test is performed by injecting this chemical into a vein. Improvement Clinical Features &
Thymectomy (surgical removal of of strength, immediately after the the thymus gland) is another injection, provides strong support MG occurs in all races, both genders treatment used in some patients. for the diagnosis of MG. Sometimes and at any age. MG is not directly The thymus gland lies behind the all of these tests are negative or inherited nor is it contagious. It does breastbone and is an important part equivocal in someone whose story occasionally occur in more than one of the immune system. When there and examination still seem to point member of the same family. MG may is a tumor of the thymus gland (in to a diagnosis of MG. The positive affect any muscle that is under 10-15%), it is always removed clinical findings should probably voluntary control. Certain muscles because of the risk of malignancy. take precedence over negative are more frequently involved and Thymectomy frequently lessens the confirmatory tests.
these include the ones that control severity of the MG weakness after eye movements, eyelids, chewing, some months. In some people, the swallowing, coughing and facial weakness may completely disappear. expression. Muscles that control There is no known cure for MG, but This is called a remission. The breathing and movements of the there are effective treatments that degree to which the thymectomy arms and legs may also be affected. allow many, but not all people with helps varies with each patient. Weakness of the muscles needed for MG, to lead full lives. Common Plasma pheresis or plasma exchange breathing may cause shortness of treatments include medications, may be useful in the treatment of breath, difficulty taking a deep thymectomy and plasmapheresis. MG also. This procedure removes breath and coughing.
Spontaneous improvement, even the abnormal antibodies from the plasma of the blood. The remission, may occur without The muscle weakness of MG improvement in muscle strength specific therapy. Medications are increases with continued activity and may be striking but is usually short- most frequently used in treatment. improves after periods of rest. The lived since production of the Anticholinesterase agents (e.g., muscles involved may vary greatly abnormal antibodies continues. Mestinon) allow acetylcholine to from one patient to the next. When plasma pheresis is used, it remain at the neuromuscular Weakness may be limited to the may require repeated exchanges. junction longer than usual so that muscles controlling eye movements Plasma exchange may be especially more receptor sites can be activated. and the eyelids. This form of useful during severe MG weakness Corticosteroids (e.g., prednisone) myasthenia is referred to as Ocular or prior to surgery. Treatment and immunosuppressant agents MG. In its severest form, MG decisions are based on knowledge of (e.g., Imuran) may be used to involves many of the voluntary the natural history of MG in each suppress the abnormal action of the muscles of the body including those patient and the predicted response immune system that occurs in MG. needed for breathing. The degree to a specific form of therapy. and distribution of muscle weakness Intravenous immunoglobulins Treatment goals are individualized for many patients falls in between (IVIg) are sometimes used to affect according to the severity of the MG these two extremes. When the the function or production of the weakness, the patient's age and sex, weakness is severe and involves abnormal antibodies also.
and the degree of impairment.
A Layman Guide to GBS/CIDP Diagnosis & Treatment In Pakistan GBS patients are What is GBS?
being reported from the poor Guillain-Barre Syndrome (GBS) is a disorder in which the body's population. Day by day due to the immune system attacks the nerves. It is rare, occurring in only one or poor living conditions and two people per 100,000. It can develop rapidly, beginning with environmental pollution is weakness and abnormal sensations in the extremities and often creating the alarming situation of progressing to paralyze the body within days. In many cases, the GBS patients in Pakistan.
paralysis extends to the arms, face, and even the breathing muscles - forcing patients to rely on ventilator. But in most cases, GBS is temporary, with more that 85% of patients making a recovery.
How are GBS & CIDP What is CIDP?
CIDP is also caused by the body's immune system attacking the nerves. As with GBS, the major symptom in CIDP is ascending weakness, but it For patients with GBS, treatment occurs slowly over at least 2 months and is often accompanied by concentrates on supporting the patient abnormal sensations, such as tingling and numbness. These symptoms during paralysis, reducing the severity are usually not as severe as in GBS, but they can often recur. However, CIDP does tend to respond very well to treatment, with around 80% of of the condition, and speeding recovery. new cases showing a dramatic response to therapy.
Newly diagnosed patients are usuallyhospitalized and placed in an intensive How do GBS & CIDP Develop?
care unit, where body functions can be GBS and CIDP damage the nerves that extend from the spinal cord and monitored and adequate support given run throughout the body, transmitting electrical signals from the brain to enable movement, sensation, and the regulation of body functions, during paralysis. Patients are then such as breathing and the heartbeat. In healthy people, many of these given treatment to help combat the nerves are covered by a protective sheath, just as household electrical condition. on type of treatment, plasma wires are covered by insulation. But in GBS and CIDP, the body's exchange, aims to clean the blood of the immune system attacks the protective sheath causing damage that antibodies that attack the nerves. slows done or stops the nerves from conducting the brain's signals, which can lead to weakness, loss of sensation, and even paralysis.
Another treatment, high-dose Nobody knows for sure why the immune system attacks the nerves in intravenous immunoglobulin therapy, CIDP. But in the case of GBS, various events may act as trigger. Many is thought to block the harmful cases occur shortly after a viral or bacterial infection, such as the antibodies. Both of these treatments are common cold, a sore throat, or diarrhea. Cases have also developed equally effective and can dramatically fallowing surgery or immunizations. Normally, the body's immune system can recognize and attack microbes that invade the body. Current speed the patient toward recovery.
theory on GBS, however, suggests that the body is infected by a microbe that somehow resembles the nerves. So when the immune system Patients with CIDP tend not to need targets the intruding infection, the nerves are attacked inadvertently.
intensive care. They may also benefitfrom treatment with steroids or HOW are GBS & CIDP Diagnoses?
immunosuppressive drugs that help Dignosis of GBS and CIDP is often based on the patient's symptoms and a physical exam. The onset of muscle weakness is usually distinctive- stop the from attacking the nerves.
ascending on both sides of the body, rather that affecting one side as in a Such treatments are no suited to every stroke. In the case of GBS, the progression of weakness is also rapid; patient because they reduce the body's whereas with CIDP, the progression of weakness takes much longer and ability to fight infection. But in cases is generally less severe-rarely extending to affect the breathing or facial where these treatments are not an muscles. Both conditions are associated with loss of reflexes, such as the option, patients can often respond well knee jerk, and diagnosis can be confirmed by measuring protein levels in the spinal fluid and through the testing of nerve and muscle function.
to the same treatments used for GBS.
MG and Pregnancy
Things to Consider for Myasthenic Mother!
Myasthenia Gravis (MG) is common in women of child-bearing age. The effect
of MG on women and their newborns should be carefully considered and
monitored during and following pregnancy. Below are some questions that
women often ask in this situation.
Will my baby be healthy?
Overall the risk of birth defects is not increased for women with MG and is
comparable to pregnancies of women without MG. A rare birth defect that has
been linked to MG is arthrogryposis, which refers to muscle weakness and
joint deformities that are present at birth. Women who have large amounts of a
specific type of antibody that targets the infantile form of the acetylcholine
receptor are more likely to deliver babies with arthrogryposis. The fortunate
feature is that women who deliver babies with arthrogryposis usually do not
have clinical MG. The subset of antibodies that cause arthrogryposis, do not
cause symptoms in adults. Consequently, women who have MG are not likely
to have babies with arthrogryposis. Severe arthrogryposis can be recognized
by ultrasound prior to delivery. One health concern that women with MG and
their doctors must consider is transient neonatal MG (TNMG). TNMG occurs
when MG antibodies are transferred from the mother to the baby and can be
effectively addressed if anticipated. The baby will need treatment, perhaps for
several days to a week, until the MG antibodies from the mother have been
removed from the baby or spontaneously broken down. Babies who have had
TNMG have grown to be normal children.
How will my MG treatment complicate my ability to get pregnant?
Women need to consider several issues and have extensive discussion with their physicians and other women who
have been pregnant before they attempt pregnancy. As pregnancy advances, women frequently feel fatigued.
Fatigue can be more prominent in women with MG. Treatment with anticholinesterase medications, such as
pyridostigmine (mestinon®), does not affect the ability of an individual to become pregnant nor is it known to
appreciably complicate a woman's ability to carry a pregnancy. There is slight risk of anticholinesterase medication
triggering or enhancing uterine contractions. Many people with MG are treated with medications that alter the
immune system, immunosuppressive agents. Immunosuppressive agents include glucocorticoids, such as
prednisone, azathiaprine, mofetil mofetate (CellCept®), cyclosporine and other agents. It is essential if you are
taking a medication or treatment to alter your immune system that you discuss the risks associated with getting
pregnant when using that treatment. In general glucocorticoids can be continued during pregnancy.
How will pregnancy affect my MG?
About a third of women with MG will have a flare of their MG during the first trimester of pregnancy. In general, MG
symptoms, with the exception of general fatigue, tend to decline during the second and third trimesters of
pregnancy. As pregnancy advances, breathing during sleep can be compromised in any pregnant woman. Because
disorders of sleep, particularly sleep apnea, are often under-recognized in people who have MG, women
contemplating pregnancy should discuss with their caregivers whether they should have a sleep study to evaluate
their breathing when asleep. The usual treatment for sleep apnea, continuous positive airway pressure (CPAP), does
not complicate pregnancy.
Reference
Carlayne E. Jackson The effect of myasthenia gravis on pregnancy and the newborn. Neurology 2003; 61; 1459-1460 [The online
version of this article, along with updated information and services, is located on the World Wide Web at: http://www.neurology.
org/cgi/content/full/61/10/1459] See the MGFA website for the full article on Pregnancy and MG or contact National at 800-541-5454
for a copy of the brochure.
(Courtesy MGFA fall 2010) New Drug (Monarsen EN101) for Myasthenia Gravis Patients This brief text addresses Monarsen (also known as EN101). Monarsen is an orally available preparation of nucleic acids (DNA and RNA are made of long strings of nucleic acids) that is designed to interfere with the production of acetylcholine esterase (AChE). This is a novel approach to inhibiting AChE. Mestinon is a medication that is commonly used by people with MG and it acts by inhibiting AChE. Monarsen would take longer to act then Mestinon, but could be taken once a day. Consequently, Monarsen has the potential to be an alternative to Mestinon for people with MG. An additional possible benefit of Monarsen is that it may act to suppress the immune system through its action on a form of AChE that may modulate the action of white cells. Monarsen was developed by basic researchers in Israel. These researchers sold the international production rights for Monarsen to an Israeli company, Ester. The Israeli Company then sold the rights to a British company, Amarin Corp (UK). Amarin has chosen not to continue with the development of Monarsen. Specifically, Amarin is not planning to pursue with phase II or phase III clinical trials of Monarsen. As the rights to Monarsen are owned by a private company, researchers are not able to independently study this preparation. It is MGFA policy not to invest money in private companies, such as Amarin. The Medical/Scientific Advisory Board (M/SAB) of MGFA has Young female patients communicated with a researcher in the United Kingdom who is trying to under Plasmapheresis negotiate with Amarin to be able to use Monarsen. To date, Amarin has treatment at PMWO Center not been willing to allow others to use Monarsen in research studies nor have they moved Monarsen through the process of getting this preparation approved for clinical use with patients. The M/SAB will continue to explore new strategies to improve the lives of people with MG and to pursue research on treatment for MG. Unfortunately, the M/SAB and other researchers are currently blocked from studying Monarsen. (Courtesy MGFA fall 2010)

Source: http://www.pmwo.org.pk/files/NewsLetter%20Dec%202010.pdf