Tae and Eli Fund Fundraiser Event
All profits from the fundraiser will go to Sian-Tae and Eli
Date: Saturday 9th May 2015
Time: 7:30 to 4:30
Venue: Augusta Country Estate Clubhouse
Cost of R480-00 includes:
A fun-filled, great value for money day, with loads of prizes & giveaways
2 x double scrapbooking pages, suitable for beginners & advanced scrappers
Morning & afternoon refreshments and snacks
A delicious light lunch by Stretta
Goodie bags, Retail therapy with loads of specials!
Reunited after 4 weeks in Intensive Care Unit
It was only on the night after giving birth to Eli on the 3rd of February 2015 that the reality of the situation set in. The last week of her pregnancy had been hard and the numb hands and feet and pain had all been put down to “end of pregnancy”. But that was not the truth…
After a full evaluation the news was broken that Sian-Tae, 18, had Guillain-Barré syndrome (GBS) a debilitating auto immune disease, that basically has the body attacking its own nervous system, causing paralyzing effects and weakening the organs. Sian-Tae had great difficulty breathing and was unable to move her arms and legs. The syndrome is often fatal and reactions vary from patient to patient, but one thing is certain, every patient goes through 4 weeks of hell while the body is attacked and annihilated.
Sian -Tae for the first 4 weeks of her baby boys life did not get to love, hold and feel him as she had so looked forward to during her 9 month pregnancy. She had a perfectly healthy pregnancy and this was not how she saw the first month with him.
Armed with a relentless family of strong faith and positive energy the 4 weeks were covered in high care and ICU with a family member at her bedside and Eli getting the best care possible at home with his grand mother. (Eli was not allowed into ICU for the 4 weeks she was there and she only saw him from a distance through the window.) She fought a strong brave fight and it was sad and hard, especially not being able to be a mommy, but having to cope with the rotten hand she was dealt.
5 weeks down the line, Sian-Tae is on the road to recovery, and has regained some feeling and movement. She was transferred to Entabeni Hospital Rehabilitation Center for intense Physio and Occupational therapy. Her muscles are non-existent and it’s taking hard work on her behalf to get her body back in motion, but she has the motivation to get home to her baby boy, Eli.
Eli is not allowed to stay in the hospital, so for now, Sian-Tae is only able to see him during afternoon visiting hours or on weekends, when his Grandmother is able to get him there.
The prognosis is about 6 months to a year for recovery. We are hoping and praying for a full recovery, however, nothing with this disease is guaranteed. All funds raised will be used for medical expenses that are not covered by medical insurance, nursing facilities, therapy during & after rehab, and for the care and upkeep of baby Eli. Every little bit helps relieve Sian-Tae of financial stress during her recovery and to ease a bit of pressure on the family financially.
We would like to take this opportunity to thank everyone, from the bottom of our hearts, for their support, prayers, friendship and positive energy.
The Metzler Family
Kindly send us your company logo/details, so that we may add you to our list of donors and formally thank you for your contribution. Please feel free to check on our website, facebook and blog, for regular updates on Sian-Tae and Eli’s progress and status of funds raised.
Guillain Barre syndrome
What is Guillain-Barré syndrome?
Guillain-Barré syndrome (GBS) is a disorder in which the body’s immune system attacks part of the peripheral nervous system. The first symptoms of this disorder include varying degrees of weakness or tingling sensations in the legs. In many instances the symmetrical weakness and abnormal sensations spread to the arms and upper body. These symptoms can increase in intensity until certain muscles cannot be used at all and, when severe, the person is almost totally paralyzed. In these cases the disorder is life threatening – potentially interfering with breathing and, at times, with blood pressure or heart rate – and is considered a medical emergency. Such an individual is often put on a ventilator to assist with breathing and is watched closely for problems such as an abnormal heart beat, infections, blood clots, and high or low blood pressure. Most individuals, however, have good recovery from even the most severe cases of Guillain-Barré syndrome, although some continue to have a certain degree of weakness.
Guillain-Barré syndrome can affect anybody. It can strike at any age and both sexes are equally prone to the disorder. The syndrome is rare, however, afflicting only about one person in 100,000. Usually Guillain-Barré occurs a few days or weeks after the patient has had symptoms of a respiratory or gastrointestinal viral infection. Occasionally surgery will trigger the syndrome. In rare instances vaccinations may increase the risk of GBS.
After the first clinical manifestations of the disease, the symptoms can progress over the course of hours, days, or weeks. Most people reach the stage of greatest weakness within the first 2 weeks after symptoms appear, and by the third week of the illness 90 percent of all patients are at their weakest.
What causes Guillain-Barré syndrome?
No one yet knows why Guillain-Barré — which is not contagious — strikes some people and not others. Nor does anyone know exactly what sets the disease in motion.
What scientists do know is that the body’s immune system begins to attack the body itself, causing what is known as an autoimmune disease. Usually the cells of the immune system attack only foreign material and invading organisms. In Guillain-Barré syndrome, however, the immune system starts to destroy the myelin sheath that surrounds the axons of many peripheral nerves, or even the axons themselves (axons are long, thin extensions of the nerve cells; they carry nerve signals). The myelin sheath surrounding the axon speeds up the transmission of nerve signals and allows the transmission of signals over long distances.
In diseases in which the peripheral nerves’ myelin sheaths are injured or degraded, the nerves cannot transmit signals efficiently. That is why the muscles begin to lose their ability to respond to the brain’s commands, commands that must be carried through the nerve network. The brain also receives fewer sensory signals from the rest of the body, resulting in an inability to feel textures, heat, pain, and other sensations. Alternately, the brain may receive inappropriate signals that result in tingling, “crawling-skin,” or painful sensations. Because the signals to and from the arms and legs must travel the longest distances they are most vulnerable to interruption. Therefore, muscle weakness and tingling sensations usually first appear in the hands and feet and progress upwards.
When Guillain-Barré is preceded by a viral or bacterial infection, it is possible that the virus has changed the nature of cells in the nervous system so that the immune system treats them as foreign cells. It is also possible that the virus makes the immune system itself less discriminating about what cells it recognizes as its own, allowing some of the immune cells, such as certain kinds of lymphocytes and macrophages, to attack the myelin. Sensitized T lymphocytes cooperate with B lymphocytes to produce antibodies against components of the myelin sheath and may contribute to destruction of the myelin. In two forms of GBS, axons are attacked by antibodies against the bacteria Campylobacter jejuni, which react with proteins of the peripheral nerves. Acute motor axonal neuropathy is particularly common in Chinese children. Scientists are investigating these and other possibilities to find why the immune system goes awry in Guillain-Barré syndrome and other autoimmune diseases. The cause and course of Guillain-Barré syndrome is an active area of neurological investigation, incorporating the cooperative efforts of neurological scientists, immunologists, and virologists.
How is Guillain-Barré syndrome diagnosed?
Guillain-Barré is called a syndrome rather than a disease because it is not clear that a specific disease-causing agent is involved. A syndrome is a medical condition characterized by a collection of symptoms (what the patient feels) and signs (what a doctor can observe or measure). The signs and symptoms of the syndrome can be quite varied, so doctors may, on rare occasions, find it difficult to diagnose Guillain-Barré in its earliest stages.
Several disorders have symptoms similar to those found in Guillain-Barré, so doctors examine and question patients carefully before making a diagnosis. Collectively, the signs and symptoms form a certain pattern that helps doctors differentiate Guillain-Barré from other disorders. For example, physicians will note whether the symptoms appear on both sides of the body (most common in Guillain-Barré) and the quickness with which the symptoms appear (in other disorders, muscle weakness may progress over months rather than days or weeks). In Guillain-Barré, reflexes such as knee jerks are usually lost. Because the signals traveling along the nerve are slower, a nerve conduction velocity (NCV) test can give a doctor clues to aid the diagnosis. In Guillain-Barré patients, the cerebrospinal fluid that bathes the spinal cord and brain contains more protein than usual. Therefore a physician may decide to perform a spinal tap, a procedure in which a needle is inserted into the patient’s lower back and a small amount of cerebrospinal fluid from the spinal column is withdrawn for study..
How is Guillain-Barré treated?
There is no known cure for Guillain-Barré syndrome. However, there are therapies that lessen the severity of the illness and accelerate the recovery in most patients. There are also a number of ways to treat the complications of the disease.
Currently, plasma exchange (also called plasmapheresis) and high-dose immunoglobulin therapy are used. Both of them are equally effective, but immunoglobulin is easier to administer. Plasma exchange is a method by which whole blood is removed from the body and processed so that the red and white blood cells are separated from the plasma, or liquid portion of the blood. The blood cells are then returned to the patient without the plasma, which the body quickly replaces. Scientists still don’t know exactly why plasma exchange works, but the technique seems to reduce the severity and duration of the Guillain-Barré episode. This may be because plasmapheresis can remove antibodies and other immune cell-derived factors that could contribute to nerve damage.
In high-dose immunoglobulin therapy, doctors give intravenous injections of the proteins that, in small quantities, the immune system uses naturally to attack invading organisms. Investigators have found that giving high doses of these immunoglobulins, derived from a pool of thousands of normal donors, to Guillain-Barré patients can lessen the immune attack on the nervous system. Investigators don’t know why or how this works, although several hypotheses have been proposed.
The use of steroid hormones has also been tried as a way to reduce the severity of Guillain-Barré, but controlled clinical trials have demonstrated that this treatment not only is not effective but may even have a deleterious effect on the disease.
The most critical part of the treatment for this syndrome consists of keeping the patient’s body functioning during recovery of the nervous system. This can sometimes require placing the patient on mechanical ventilatory assistance, a heart monitor, or other machines that assist body function. The need for this sophisticated machinery is one reason why Guillain-Barré syndrome patients are usually treated in hospitals, often in an intensive care ward. In the hospital, doctors can also look for and treat the many problems that can afflict any paralyzed patient – complications such as pneumonia or bed sores.
Often, even before recovery begins, caregivers may be instructed to manually move the patient’s limbs to help keep the muscles flexible and strong and to prevent venous sludging (the buildup of red blood cells in veins, which could lead to reduced blood flow) in the limbs which could result in deep vein thrombosis. Later, as the patient begins to recover limb control, physical therapy begins. Carefully planned clinical trials of new and experimental therapies are the key to improving the treatment of patients with Guillain-Barré syndrome. Such clinical trials begin with the research of basic and clinical scientists who, working with clinicians, identify new approaches to treating patients with the disease.
What is the long-term outlook for those with Guillain-Barré syndrome?
Guillain-Barré syndrome can be a devastating disorder because of its sudden and unexpected onset. In addition, recovery is not necessarily quick. As noted above, patients usually reach the point of greatest weakness or paralysis days or weeks after the first symptoms occur. Symptoms then stabilize at this level for a period of days, weeks, or, sometimes, months. The recovery period may be as little as a few weeks or as long as a few years. About 30 percent of those with Guillain-Barré still have a residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack.
Guillain-Barré syndrome patients face not only physical difficulties, but emotionally painful periods as well. It is often extremely difficult for patients to adjust to sudden paralysis and dependence on others for help with routine daily activities. Patients sometimes need psychological counseling to help them adapt.
What research is being done?
Scientists are concentrating on finding new treatments and refining existing ones. Scientists are also looking at the workings of the immune system to find which cells are responsible for beginning and carrying out the attack on the nervous system. The fact that so many cases of Guillain-Barré begin after a viral or bacterial infection suggests that certain characteristics of some viruses and bacteria may activate the immune system inappropriately. Investigators are searching for those characteristics. Certain proteins or peptides in viruses and bacteria may be the same as those found in myelin, and the generation of antibodies to neutralize the invading viruses or bacteria could trigger the attack on the myelin sheath. As noted previously, neurological scientists, immunologists, virologists, and pharmacologists are all working collaboratively to learn how to prevent this disorder and to make better therapies available when it strikes.