Guillain Barre Syndrome ~ What you need to know!
Recently you may have read an exclusive interview given by our owner and the story behind how Wicked Wonders VIP Bling began. Interior to that story it was revealed that, while the beginning of our amazing bling adventure was exciting, it was met with personal circumstances of a great struggle for the Discepolo family. Since then, we have received hundreds of messages reaching out with questions more specific to what happened. Here is a more detailed look into the struggle that almost took a loving husband and father away from his beloved family.
Wicked Wonders VIP Bling was the heart-child of our owner Shay Discepolo. She launched her dream of owning an online boutique back in October 2015. Exactly three days after the launch, her husband John Discepolo ended up in the ICU.
It had started about 10-days prior. Mr. Discepolo was experiencing numbness in his feet and hands. Initially, he and his wife thought he maybe had a pinched nerve. They visited a chiropractor, had an adjustment, and things only went downhill from there. Over the course of those 10 days, John's symptoms worsened. Shay took him to the ER several times for unexplained symptoms. Each time they were told something different but in general, they were told he was having panic attacks. He was increasingly in pain so each visit they would administer strong pain medications and send him on his way. On one particular ER visit, he came home stumbling. Everyone assumed it was from all the medication. A trusted friend suggested they contact a neurologist. On the day of that first neurology appointment, John was changing his 23-month-old son's diaper. As he removed his son from the changing table, he fell backward and cracked his head on the tile floor. Thankfully he had safely gotten his child to the ground before falling. The day of the neurology appointment, Shay and John went in with John barely able to put one foot in front of the other. The doctor did some standard reflex testing. He hammered on John's reflex points on his legs and there was zero response. An ambulance was called and John was taken to the Emergency Room immediately.
A spinal tap revealed what the neurologist immediately suspected. John had Guillian-Barre Syndrome. Within 10-days he went from being normal and healthy to paralyzed and unable to walk. Initially relieved for a diagnosis, the couple had no idea what was in store for them. He was transferred to the ICU immediately.
What is Guillain-Barré Syndrome?
Guillain-Barré syndrome is a rare but serious autoimmune disorder in which the immune system attacks healthy nerve cells in your peripheral nervous system. This leads to weakness, numbness, and tingling. It can eventually cause paralysis. The cause of this condition is unknown, but it’s typically triggered by an infectious illness, such as the stomach flu or a lung infection.
Guillain-Barré is rare, affecting only about 1 in 100,000 Americans, according to the National Institute of Neurological Disorders and Stroke. There’s no cure for the syndrome, but treatment can reduce the severity of your symptoms and shorten the duration of the illness.
What are the symptoms of Guillain-Barré Syndrome?
Unexplained sensations often occur first, such as tingling in the feet or hands, or even pain, often starting in the legs or back. Many will also show symptoms with difficulty walking. Weakness on both sides of the body is the major symptom that prompts most people to seek medical attention. The weakness may first appear as difficulty climbing stairs or walking. Symptoms often affect the arms, breathing muscles, and even the face, reflecting more widespread nerve damage. Occasionally symptoms start in the upper body and move down to the legs and feet. This is precisely what happened to John.
Most people reach the greatest stage of weakness within the first two weeks after symptoms appear; by the third week, 90 percent of affected individuals are at their weakest.
In addition to muscle weakness, symptoms may include:
- Difficulty with eye muscles and vision
- Difficulty swallowing, speaking or chewing
- Pricking or pins and needles sensations in the hands and feet
- Pain that can be severe, particularly at night
- Coordination problems and unsteadiness
- Abnormal heartbeat/rate or blood pressure
- Problems with digestion and/or bladder control.
These symptoms can increase in intensity over a period of hours, days, or weeks 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.
Guillain-Barré syndrome is one of several disorders involving weakness due to peripheral nerve damage caused by the person’s immune system. While GBS comes on rapidly over days to weeks, and the person usually recovers, other disorders develop slowly and can linger or recur.
The most common type of GBS seen in the United States is acute inflammatory demyelinating polyneuropathy (AIDP). In AIDP, the immune response damages the myelin coating and interferes with the transmission of nerve signals. In two other types of Guillain-Barré syndrome, acute motor axonal neuropathy (AMAN) and acute motor-sensory axonal neuropathy (AMSAN), the axons themselves are damaged by the immune response.
What is the Treatment for Guillain-Barré?
There is no known cure for Guillain-Barré syndrome. However, some therapies can lessen the severity of the illness and shorten recovery time. There are also several ways to treat the complications of the disease.
Because of possible complications of muscle weakness, problems that can affect any paralyzed person (such as pneumonia or bed sores) and the need for sophisticated medical equipment, individuals with Guillain-Barré syndrome are usually admitted and treated in a hospital’s intensive care unit.
There are currently two treatments commonly used to interrupt immune-related nerve damage. One is plasma exchange (PE, also called plasmapheresis); the other is high-dose immunoglobulin therapy (IVIg). Both treatments are equally effective if started within two weeks of onset of GBS symptoms, but immunoglobulin is easier to administer. Using both treatments in the same person has no proven benefit. John received IVIg therapy.
Immunoglobulins are proteins that the immune system naturally makes to attack infecting organisms. IVIg therapy involves intravenous injections of these immunoglobulins. The immunoglobulins are developed from a pool of thousands of normal donors. When IVIg is given to people with GBS, the result can be a lessening of the immune attack on the nervous system. The IVIg can also shorten recovery time. Investigators believe this treatment also lowers the levels or effectiveness of antibodies that attack the nerves by both “diluting” them with non-specific antibodies and providing antibodies that bind to the harmful antibodies and take them out of commission.
Supportive care is very important to address the many complications of paralysis as the body recovers and damaged nerves begin to heal. Respiratory failure can occur in GBS, so close monitoring of a person’s breathing should be instituted initially. Sometimes a mechanical ventilator is used to help support or control breathing. The autonomic nervous system (that regulates the functions of internal organs and some of the muscles in the body) can also be disturbed, causing changes in heart rate, blood pressure, toileting, or sweating. Therefore, the person should be put on a heart monitor or equipment that measures and tracks body function. Occasionally GBS-related nerve damage can lead to difficulty handling secretions in the mouth and throat. In addition to the person choking and/or drooling, secretions can fall into the airway and cause pneumonia.
As individuals begin to improve, they are usually transferred from the acute care hospital to a rehabilitation setting. Here, they can regain strength, receive physical rehabilitation and other therapy to resume activities of daily living, and prepare to return to their pre-illness life. John was transferred for inpatient rehab for 3 weeks and did outpatient rehab for months.
Complications in GBS can affect several parts of the body. Often, even before recovery begins, caregivers may use several methods to prevent or treat complications. For example, a therapist may be instructed to manually move and position the person’s limbs to help keep the muscles flexible and prevent muscle shortening. Injections of blood thinners can help prevent dangerous blood clots from forming in leg veins. Inflatable cuffs may also be placed around the legs to provide intermittent compression. All or any of these methods help prevent blood stagnation and sludging (the buildup of red blood cells in veins, which could lead to reduced blood flow) in the leg veins. Muscle strength may not return uniformly; some muscles that get stronger faster may tend to take over a function that weaker muscles normally perform—called substitution. The therapist should select specific exercises to improve the strength of the weaker muscles so their original function can be regained.
Occupational and vocational therapy help individuals learn new ways to handle everyday functions that may be affected by the disease, as well as work demands and the need for assistive devices and other adaptive equipment and technology.
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 rapid, unexpected onset of weakness—and usually actual paralysis. Fortunately, 70% of people with GBS eventually experience a full recovery. With careful intensive care and successful treatment of infection, autonomic dysfunction, and other medical complications, even those individuals with respiratory failure usually survive.
Typically, the point of greatest weakness occurs days to at most 4 weeks after the first symptoms occur. Symptoms then stabilize at this level for a period of days, weeks, or, sometimes months. Recovery, however, can be slow or incomplete. The recovery period may be as little as a few weeks up to a few years. Some individuals still report ongoing improvement after 2 years. About 30 percent of those with Guillain-Barré have residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack. About 15 percent of individuals experience long-term weakness; some may require ongoing use of a walker, wheelchair, or ankle support. Muscle strength may not return uniformly.
Ongoing fatigue, pain, and other annoying sensations can sometimes be troublesome. Fatigue is best handled by pacing activities and providing time for rest when fatigue sets in. Those with Guillain-Barré syndrome face not only physical difficulties but emotionally painful periods as well. It is often extremely difficult for individuals to adjust to sudden paralysis and dependence on others for help with routine daily activities. Individuals sometimes need psychological counseling to help them adapt. Support groups can often ease the emotional strain and provide valuable information.
Thankfully, John didn’t quit. He worked hard every single day to try and get stronger. Eventually, after 5 months he was able to return to work, although it wasn’t easy. It took John a good 18-months to 2 years to feel somewhat normal again. John has made a 99% recovery only now experiencing slight numbness in his feet and fatigue from time to time.
Causes of GBS
Researchers do not fully understand what causes GBS. Most people with GBS report an infection before they have GBS symptoms. Rarely, vaccination has also been associated with the onset of GBS (for example, the 1976 Swine influenza vaccine). Several countries that have experienced Zika outbreaks recently have reported increases in people who have Guillain-Barré syndrome (GBS). CDC is continuing to investigate the link between GBS and Zika to learn more.
When asked, the Discepolo family can only express their extreme gratitude for all the amazing medical treatment that John received at Palms West Hospital and thank God every day that he is still here to be the amazing husband and father his family cherishes. There was a time when they didn't know if John would make it to his next birthday. Their entire family is happy to report he has celebrated several birthdays since falling prey to this rare and heartbreaking disorder.
Today John is doing amazing. He is back to doing everything he loves to do. He even learned to play guitar as a way to help him with his occupational rehabilitation! His kids especially enjoy that! He is even getting back into one of his favorite past-times - HOCKEY!
So that is the backstory on the Discepolo clan and their fearless patriarch. John is an inspiration to many others with GBS as he now dedicates time towards speaking with others in the midst of this terrifying and rare disorder. We hope that the Discepolo Family story will serve as a reminder to everyone that behind all small business is a story. Small business owners are just like you with their own stories and struggles which is why we at Wicked Wonders VIP Bling cannot thank you enough for supporting our small business bling venture! Thank you to you all! Visit us here to find all your bling needs at an affordable price. We love you!
For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:
P.O. Box 5801
Bethesda, MD 20824
Information also is available from the following organizations:
GBS/CIDP Foundation International
375 East Elm Street
Conshohocken, PA 19428
National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
Thank you for this information I was diagnosed with GBS 1990 when I was 11 years old. I was paralyzed and treated at Childrens hospital is Louisiana. I recovered two months later. I went through the same process. I am 38 years old now and I always wondered about that sickness I had when I was a child called GBS. I never found any information or anyone that shared this sickness. This information is very helpful, it’s a continuous study for the rest of my life. I have been told that I am allergic do the flu shot.
Thank you for sharing this vitally important story of John’s illness, struggles and recovery. Of course, everyone who loves him kept in close touch, visited or helped in whatever small or big way they could so some of us are familiar with parts or most of his story. The importance of sharing this is twofold. One is to help others recognize the symptoms so they can seek treatment as soon as possible. The second is to educate the folks in John’s life who had no clue how serious his illness was, how close his family was to losing him and just how hard and determined John’s fight to recover was for him each day as he pushed himself through therapy so he could return to life as he knew it before GBS. John truly is a remarkable man and deserves nothing less than praise for managing to survive and overcome this horrific life-threatening experience. We love you, John, and will always be grateful for our dear friend’s determination to survive and ability to recover. Please stay well!