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Cindy Milloy contacted Mayor Judy B. Cook, of Pembroke Georgia about
Myasthenia Gravis. Cindy made a thousand teal ribbons and bookmarkers and
gave them out at the hospital and anyone who came in contact with her. She
contacted the Savannah NOW Newspaper and WTOC 11 News and had the following
article and news clip broadcasted. |
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State Senator Richard T. Moore (D-Uxbridge), Robert DeBoer, a resident of Sutton and Chairman of the Massachusetts/New Hampshire Chapter of the Myasthenia Gravis (MG) Foundation of America, State Representative Jennifer M. Callahan (D-Sutton) |
BOSTON - State Representative Jennifer M. Callahan (D-Sutton) and State Senator Richard T. Moore (D-Uxbridge) announces that June 2006 has officially been named “Myasthenia Gravis Awareness Month.”
Robert DeBoer, a resident of Sutton and Chairman of the Massachusetts/New Hampshire Chapter of the Myasthenia Gravis (MG) Foundation of America, was honored at a State House ceremony on Wednesday, June 14. DeBoer and members of the Myasthenia Gravis Foundation received a proclamation from the Governor that declares June “Myasthenia Gravis Awareness Month” The Foundation: also received a legislative resolution that commemorates Myasthenia Gravis Awareness Month.
“MG is a very rare disease that only about 70,000 people in the United States have,” said DeBoer. “Very few doctors are aware of it. After I began to show symptoms of the disease, I was fortunate to be sent to a neurologist that diagnosed me within four months. Most people are misdiagnosed for years. Today, through the Foundation and MG Awareness Month, the Foundation’s goal is to make 100% of doctors in the state aware of MG.”
“I am extremely proud to know that a resident from my hometown has worked so hard to bring awareness about MG to the residents of the Commonwealth,” said Callahan. “I believe that establishing MG Awareness Month will help Robert and the Foundation reaches their goal of making 100% of doctors in Massachusetts aware of this disease. As both a registered nurse and member of the Joint Committee on Public Health, I personally understand that increasing awareness among health care providers is a key to both better treatments and more accurate diagnoses of the disease.”
DeBoer was diagnosed with MG in 2001..,.. He became a member of the Foundation shortly after he was diagnosed with the disease. As a member of the Foundation, he successfully worked with the Town of Sutton to proclaim June MG Awareness Month. After he became Chairman of the foundation this past year he decided to move forward and ask for the month of June to become MG Awareness Month statewide. He contacted Callahan, who immediately worked with the Governor’s office to make a proclamation.
DeBoer’s wife, Grace; Assistant Chairman of the MG Foundation Judy Weinberg, and her husband, Marc, Treasurer of the Foundation; and Dr. David Weinberg joined DeBoer at the State House on Wednesday. Judy and Marc Weinberg’s daughter was diagnosed with MG when she was only 12 years old.
“I am pleased to be able to offer this special resolution commemorating Myasthenia Gravis Disease Awareness Month,” said Moore. “Mr. DeBoer and the Massachusetts Chapter of the MG Foundation should be commended for their tireless efforts on behalf of those people affected by this rare, often misdiagnosed disease. By raising awareness of it, I hope that we can join with the foundation in promoting a deeper understanding and better treatments of MG.”
“Myasthenia gravis” means “grave muscular weakness.” It is a chronic neuromuscular disease that attacks the immune system and restricts transmission of neuroimpulses from the brain to voluntary muscles. Muscle weakness increases with continued activity and can be improved with periods of rest. The most severe muscle weakness involves many of the voluntary muscles including those used for breathing.
MG is estimated to occur in 14 per 100,000 citizens in the United States, approximately 70,000 cases, but many more cases are undiagnosed. Many people are not diagnosed for five to seven years because the symptoms create a diagnostic dilemma for physicians unaware of the disease. “MG is incurable,” said DeBoer. “It is difficult for doctors to do research because such a small number of people have it.” DeBoer’s case of MG is currently in a drug-induced remission.
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Common symptoms of MG are drooping eyelids, double or blurred vision, slurred speech, difficulty chewing or swallowing, weakness of the limbs, and chronic muscle fatigue.
Around the World
MG Around the World is a regular feature of the MGnet Connect Newsletter. We feature a person with MG each issue, traveling all over the globe via e-mail to interview him or her. If you know someone who would make a good subject, please contact Kathleen Knorr, irishkathleen2@yahoo.com .
Nadia Maalem, France
by Debbie Marshall
It
wasn’t jet lag. It was myasthenia gravis. But Nadia Maalem of
France didn’t let MG stop her from reaching out into the world.
To deal with her disease, Nadia turned to the Internet. “After the initial shock and depression, I looked for information,” she said. “The Internet has been very helpful. That’s how I got in touch with an MG patient in my own city, who had been living with MG for 20 years. She has been supportive all along.”
Nadia has found support for herself and offered help to others through a couple of Internet forums: the Myasthenia Mail List ( ocular@asu.edu ) and an online forum created by the Moroccan founder of the Association of the Friends of Moroccan Myasthenics (AAMM).
She
credits the founder of AAMM, Dr. My Ahmed Idrissi, with doing a
wonderful job for myasthenics in his country and around the world on his
Internet forum. “We can freely talk about any topics, not just the
disease,” Nadia said. “Dr. Idrissi is an inspiration to all of us.”
As Stan Way explained in an article in the Myasthenia Gravis Foundation of America publication Foundation Focus in Fall 2005 ( www.myasthenia.org/news ), Dr. Idrissi was instrumental in getting generic Mestinon to many patients in Morocco through the generosity of Khalid Zia and the Pakistan Myasthenic Welfare Organization. (Khalid Zia was profiled in a previous “Around the World with MG” article.)
Nadia was able to meet Khalid in London to thank him on behalf of Dr. Idrissi’s AAMM. She also met Stan, a member of the MGFA Board of Directors, in Paris and thanks to him, had the privilege of meeting with leading international scientists. She does her best to keep informed about the latest research involving MG.
“The Myasthenia Mail List has helped me an awful lot,” Nadia said. “There is an international dimension to your American mail lists that I would like to pay homage to. Just imagine! I could have majored in Latin and French literature. Fortunately, I chose English, which helped me to read and translate all the posts from all over the world from all the patients asking for help and information, not only about MG but also many other autoimmune diseases.”
Nadia has sent donations of Mestinon to Morocco from friends who have
cut down on their daily intakes. She herself is taking Mestinon that is
three years old.
“There are so many people who have no access to basic treatments all over the world. MG patients in Morocco are desperate for Mestinon, which is no longer supplied in their country. Third-World countries used to import the drug, but can no longer afford it.
“Trying to help others, especially patients from other countries who have little or no access to basic treatment, has been my best therapy,” Nadia said. “MG may have weakened my physical strength (so does aging, after all!) but I never accepted it could also shrink my environment! I’m also confident that a cure for MG will be found.”
Nadia, who is 56 years old, thought she was suffering from jet lag when she returned home after a three-week trip to Arizona and New York City 11 years ago. However, the ophthalmologist she consulted for blurred vision immediately referred her to the nearest hospital’s neurology ward.
After an MRI, a lumbar puncture, EMG and a Tensilon test, she was diagnosed with MG and told she had a thymoma the size of a cauliflower. A thymectomy and six weeks of radiotherapy followed, although the thymoma was not malignant.
The operation exacerbated the MG and Nadia stayed in intensive care for two weeks. She started prednisolone (a form of prednisone), and had IVIG and plasmapheresis. Now she takes 8 mg of prednisolone every other day and 180 to 240 mg of Mestinon a day.
“My MG flared up two years ago and I was given a five-day treatment of IVIG,” Nadia said. “My symptoms are mainly blurred vision, and some difficulty chewing and speaking when I am tired or under stress.”
Nadia had to give up her job as a teacher for one year after she was diagnosed, but since then she has taught English to 18- to 20-year-old students. In addition to French and English, she speaks Spanish.
“I used to travel abroad,” she said, “but I’m afraid of traveling long distances now. I like walking but had to give up jogging and cycling. I love reading and listening to music and I am very fond of cats!”
She occupies “a very small apartment in an 18th-century house a two-minute walk from the river Garonne” in Toulouse, France. She no longer hikes in the Pyrenees, but does “swim, or paddle rather, in the Mediterranean.”
Nadia quit driving because of blurred vision and photosensitivity, but admitted, “I was such a bad driver that it must have been quite a relief for my family and friends to have me off the roads!”
Nadia has a 29-year-old son who is an engineer. “He saved my life when I started choking,” she said. “He immediately called an ambulance. If he had not realized the situation was critical I would have stopped breathing altogether. He was 18 at the time. I can still remember his frightened face when he saw his Mum with tubes all over, struggling with the breathing machine!”
Nadia reported that France has quite a few excellent MG specialists and researchers. Apart from Mestinon or Mytelase (both brand names for generic pyridostigmine) the other treatments in France are Imuran and prednisone, plasmapheresis and IVIG. “As far as I know, CellCept is not routinely prescribed,” she said.
“All those treatments are entirely free as France’s national health insurance system allows patients to get 100% coverage once they are diagnosed with a chronic condition,” she added.
Pregnancy and MG: Part 2
By Kerri Sweetis
In the Spring 2006 MGnet Connect, Kerri wrote about her treatment for MG and what she did to allow her to become pregnant despite all her medications. In a future issue, she will write about the later stage of pregnancy, the birth and the first three months of motherhood.
Sunday, December 11. We’ve known that I’m pregnant for all of 12 hours when we get to church. Doug doesn’t want me to tell anyone until we get the blood work done at the hospital.
My friend, Kim, just found out she was pregnant about four weeks ago. I saw her right away when I walked through the door. I gave her "the look" and we went into a Sunday-school room. I didn’t even have to say anything, she knew! I knew I could never keep my mouth shut!
Almost everyone found out that morning. So many people had been praying for us on our journey of trying to conceive. We wanted them all to be rejoicing with us now. The advice started right away: "Never let your tummy get too empty." "Eat crackers before you even get out of bed in the morning.” I heard all about cravings, morning sickness and fatigue, and I’d never been so happy in my life.
I called my mom that afternoon. I also called my sisters and a few good friends. I couldn’t stop smiling. My face hurt from grinning so much! Everyone we talked to was so supportive, which is awesome. I was nervous, don’t get me wrong, but we were just trusting that God would take care of us.
Now the "fun" of doctor’s appointments started: I had an appointment with my neurologist scheduled in March. I called my OB. I had to get blood work done. Because we had been so diligent before getting pregnant, I knew that my blood sugar was good, and that the medications I was on were all baby-safe.
I started feeling queasy about a week later. The fatigue kicked in about two weeks after that. Having never been pregnant before, I didn’t know what was the MG and what was "normal" pregnancy stuff. I never actually threw up, but I was nauseous a LOT. I’m not sure why they call it "morning" sickness, because I was sick all day! It was bad in the morning, and at suppertime. I knew I wasn’t gaining a lot of weight because I couldn’t eat very much at one time.
At 10 weeks, I had my first ultrasound. I stared in awe at this little
life inside of me. I couldn’t speak. I couldn’t believe it! I NEVER thought
I would ever have a baby. Doug was transfixed as well. Our little baby was
safe and happy, and the little heart was just going to town.
After the ultrasound, I had my first OB appointment. I had thought they would want to see me before 10 weeks because of my risk status, but 10 weeks it was. Everything was going fine. Other than the nausea and fatigue, I’m doing pretty well.
By the time I saw the neurologist, I was having trouble speaking clearly. It was obvious that being off the CellCept was taking its toll. My MG wasn’t out of control, but it was worse than it had been in probably four years. I was so tired I couldn’t leave the house alone. I could barely take care of my dogs. Dr. Teener (my neuro) suggested having plasmapheresis every three weeks.
At 18 weeks, we had the "big" ultrasound: We could find out if we were
having a girl or a boy (provided the child cooperated!). The ultrasound
tech asked if we wanted to know the gender, and we said yes. The very first
shot was of our little one mooning us—buns straight up in the air. It was
definitely a boy.
I was convinced it was a girl . . . so convinced that I had bought a couple of little-girl outfits! I was so thrilled it was a boy. We named him Jacob Douglas. We were going to have a son. Doug walked a little taller out of that office.
As time goes on, I am more and more fatigued. In June, the neurologist
suggested having several plasmapheresis treatments back-to-back to see if that
would give me some relief. I had four treatments in three weeks. It helped
a little, but not as much as we had hoped.
While everything with the actual pregnancy was going wonderfully, the MG monster had come out in full force. When a woman with MG gets pregnant, there is a 33 percent chance that the MG will stay the same. There is a 33 percent chance that the MG will actually improve, and a 33 percent chance that the MG will get worse. Well, we knew now which category I fit in!
I’m really having trouble speaking, to the point that people on the phone can’t understand me. I’m having a little bit of trouble swallowing, and become short of breath occasionally. Everything else is going really well: my blood pressure, my blood sugar and, most importantly, Jacob is growing right on schedule. I worry about neonatal myasthenia, but don’t allow myself to dwell on it.
Since I am high-risk, my OB wanted me to have a fetal echocardiogram, during which a cardiologist would come to the ultrasound and concentrate on the baby’s heart. So, at 22 weeks we had this done. His little heart is just perfect. I didn’t care how many tests like this they wanted to do; every test lets us see Jacob getting bigger and bigger. I have enough ultrasound pictures for a scrapbook!
I have yet to see anesthesiology, which is important because of the possibility of having a C-section. Since I cannot breathe when I lie flat, I will need to be ventilated if I have to have one. Since the tracheotomy I have now is not compatible with a vent tube, I may have to have a different trach. That means a visit to the ENT.
The neurologist wants to see me again, and I go to the OB every two weeks. I go to Ann Arbor every three weeks for pheresis. I’m so exhausted that this is about the only time I get out of the house, so I try not to complain. My time is consumed with doctor appointments and thoughts of this precious life to come.
Doug and I are thankful that the pregnancy is going as well as it is, that I am not on bed rest, and that Jacob is healthy. We press on in this journey, wondering what tomorrow will bring.
IVIG - Life or Death
Mgnet received the following article from an mg patient that relies heavily
on IVIG treatments to sustain her. Mgnet contacted the editor of the IG
Living bi-monthly magazine Kitt Bacon Gressitt. Kit has graciously giving
permission to reprint the article and she added helpful information for
Myasthenia patients having trouble-receiving IVIG.
To some Myasthenics, IVIG treatment is the dividing line between crisis
and being able to function somewhat normally at home. In crisis situations
the patient’s doctor will order several series of IVIG for the MG patient.
These treatments help the patient to be able to breath on their own and
be able to be weaned from the ventilator. Several cases of MG patients with
a major crisis continued IVIG treatments after being released from the hospital.
Even though the following story is not about a Myasthenia patient, the
story itself can be all too true for a Myasthenic.
Included in the info box is helpful phone numbers for patients having trouble getting Medicare reimbursement and receiving IVIG.
She Begged for Her Life
Rose Mary Istre, of Texas, says it is a national tragedy.
“We lost two members of our [patient] support group already, and we will lose more – it’s just a matter of time. Because patients, when they miss an IVIG treatment, they don’t usually die immediately, they don’t crash and burn…” and she pauses, a little too long.
What Rose Mary cannot say is: It takes them a while to die, but they die. She cannot quite say the words, because she lost a friend. She lost a friend who needed intravenous immune globulin (IVIG) – a human plasma product – to stay alive, but her friend could not get it.
“Pam Way had a disease, CIDP (chronic inflammatory demyelinating polyneuropathy) overlapping with myositis, which caused tremendous fatigue and muscle weakness. When I first met her, she was not walking; she was near death. Then, with IVIG, she was improving; she was walking; she was on her way to becoming a healthy person again. But when the Medicare [Modernization] bill was enacted, she was rerouted from her doctor’s office to the hospital; she was unable to get the treatments and the brand of IVIG she needed.”
Then Rose Mary explains something that too many decision-makers just do not grasp: “Patients with immune problems require very brand-specific IVIG, because each product is different. It’s a very individual type of treatment.” In fact, patients treated with brands their bodies do not tolerate can suffer life-threatening anaphylactic reactions. “And when you miss treatment,” Rose Mary continues, “it takes its toll. Gradually, Pam went downhill to the point that she was again becoming nonfunctioning. …
“Eventually, it took all the strength she had, so I pushed her in her wheelchair to speak before the Blood Safety Committee meeting, May of 2005. She literally begged for her life. The committee promised us they would take action immediately, and push for [declaration of] a national public health emergency. We represented thousands of patients across the country that was too sick to fight it themselves.”
Although the committee tried to help them, the decision-makers still did not understand that reimbursement is inadequate, that some products are scarce, that patients will die. “The national emergency never came, Pam never got the continuity of treatment she needed, and she died. And we will have more deaths,” Rose Mary says, “While Washington studies the problem.”
Today, the data gathering continues, the public health emergency has yet to be declared, and patients are losing hope. Patients are losing their lives. “I want to ask our government why these people are expendable – one of my senators even said that they were concerned that doctors might profit from this! Oh, it is OK for oil companies to make millions, but it is not OK for doctors to make a little money saving lives?
“Hurricanes happen; wars happen; we can’t stop them. But this was a mistake in the Medicare bill that could easily be corrected.”
Rose Mary is right; we do not have time to wait for studies or investigations or endless debates about whether the problem is short supply or excessively high pricing. Even with new reimbursement rate increases, effective July 1, only one immune globulin brand will become affordable and available to most patients. But most patients need the brand that keeps them alive, not just the brand that is least expensive. And still, patients are begging for their lives. Patients are dying. Patients are dead.
Rose Mary Istre says it’s a national tragedy. No, it’s worse. It’s a national abomination that this problem has persisted since January 2005. In our great United States of America, how many dead patients does it take to make a public health emergency?
Kit-Bacon Gressitt is editor of IG Living, a bi-monthly magazine for, by and about healthcare consumers who rely on immune globulin therapies and their healthcare providers. She is also vice president of marketing and communications at FFF Enterprises, a human plasma products distributor and sponsor of IG Living. Gressitt can be reached at editor@igliving.com .
Info box:If you are having a Medicare IVIG reimbursement problem, please call 800-633-4227 to report it. If you are having difficulty getting your immune globulin treatment, report your situation to the Department of Health and Human Service’s Center for Biologics Evaluation and Research (CBER) at 800-835-4709 or email your story to CBERProductShortages@cber.fda.gov . You can learn more at http://www.hhs.gov/bloodsafety/igiv.html, www.igliving.com, www.myositis.org, www.neuropathy.org, and www.primaryimmune.org . |
Additional information:
Intravenous immune globulin (IVIG) is manufactured from pooled human plasma. There are currently five manufacturers that sell six IVIG products licensed by the U.S. Food and Drug Administration (FDA). IVIG is used to treat primary immune deficiency diseases, neuropathies, myositis, bone marrow transplants, myasthenia gravis, idiopathic thrombocytopenic purpura and other serious immune system disorders.
The Medicare Modernization Act of 2003 resulted in a congressionally mandated reduction in Medicare Part B reimbursement rates for IVIG, effective January 1, 2005, and established two rates for administering IVIG to patients, depending on where they receive treatment: in the physician office and at home, or in hospital outpatient settings. Initially, the new reimbursement methodology significantly lowered the rate paid to physician offices and homecare companies for IVIG infusions, and then, in 2006, hospital outpatient rates were also lowered. Meanwhile, IVIG prices are rising and U.S. supplies of IVIG products are tight.
The Department of Health and Human Services (HHS) Advisory Committee on Blood Safety and Availability has twice recommended that HHS Secretary Mike Leavitt declare a public health emergency relative to IVIG or take other emergency steps that would give authority to the Center for Medicare and Medicaid Services (CMS) to make an emergency adjustment to the IVIG reimbursement methodology without requiring congressional approval.
Minutes of the Committee’s meetings, including patient and healthcare provider testimony, are available at http://www.hhs.gov/bloodsafety/summaries.html .
You can read the Committee’s recommendations to HHS and HHS’s responses at http://www.hhs.gov/bloodsafety/resolutions.html .
U.S Representatives Jim McCrery (R-LA), Mark Foley (R-FL) and Steve Israel (D-NY) have collected 55 colleagues’ signatures on a letter to Sec. Leavitt, urging him to declare a public health emergency so the IVIG crisis can be resolved.
The following House Members and Delegate have signed the letter to Sec.
Leavitt:
http://www.house.gov/
Rep. Jim McCrery R-LA; Rep. Mark Foley R-FL; Rep. Steve Israel D-NY; Rep. Maurice Hinchey D-NY; Rep. Phil English R-PA; Rep. Bill Young R-FL; Rep. Joseph Crowley D-NY; Rep. Dennis Moore D-KS; Rep. Ted Strickland D-OH; Rep. Tammy Baldwin D-WI; Rep. Carolyn McCarthy D-NY; Rep. Bernard Sanders I-VT; Rep. Adam Schiff D-CA; Rep. Jim Ramstad R-MN; Rep. Raul Grijalva D-AZ; Rep. Gary Ackerman D-NY; Rep. Charlie Rangel D-NY; Rep. Michael McNulty D-NY; Rep. Lee Terry R-NE; Rep. Sherrod Brown D-OH; Rep. John Tanner D-TN; Rep. Dave Camp D-MI; Rep. Rick Larsen D-WA; Rep. Clay Shaw R-FL; Rep. Brian Higgins D-NY; Rep. Howard Berman D-CA; Rep. James Oberstar D-MN; Rep. Robert Wexler D-FL; Rep. Don Sherwood R-PA; Rep. Chris Shays R-CT; Rep. Jo Ann Davis R-VA; Rep. Michael Honda D-CA; Rep. Gregory Meeks D-NY; Rep. Rob Bishop R-UT; Rep. Ellen Tauscher D-CA; Rep. Dale Kildee D-MI; Rep. Peter DeFazio D-OR; Rep. John Boozman R-AR; Rep. J.D. Hayworth R-AZ; Rep. James Walsh R-NY; Rep. Kevin Brady R-TX; Rep. Barney Frank D-MA; Rep. Jim Moran D-VA; Rep. Sam Farr D-CA; Rep. Shelley Moore Capito R-WV; Rep. Carolyn Maloney D-NY; Rep. Ron Paul R-TX; Rep. Michael Fitzpatrick R-PA; Rep. Frank Pallone D-NJ; Rep. Dennis Kucinich D-OH; Rep. Silvestre Reyes D-TX; Rep. Gene Green D-TX; Rep. John Conyers, Jr. D-MI; Rep. Tim Bishop D-NY; Rep. Eliot Engel D-NY; Rep. Anna Eshoo D-CA; Del. Donna Christenson D-VI; Rep. Chris Smith R-NJ
MG Pals
MG Pals is a one on one support—usually done online, but some meet by phone, snail mail or in person. We are continually receiving requests from MGers requesting support. Many are new, learning to live with this disease; others live in remote places where there is no easy access to support groups; then there are those who prefer one on one support rather than that of a group. Also, we get requests from those going through a difficult time with their disease. We encourage those seeking support to ask for it.
Contact by email: support@mgfa-mgnet.org
We are always in need of experienced MGers to provide support. Those
of you who have had MG for some time are aware of all the adjustments in
living that one must make to live with MG successfully. Please share your
experience with someone who needs support. If you have had some experience
with MG, and would like to be a support Pal, please let us know.
Again, send an email to: support@mgfa-mgnet.org
There is a simple application to complete which provides some information to assist in matching pals. You need not give any information that makes you feel uncomfortable.
Thanks to those who have been supporting others through this program. Looking forward to hearing for many of you.
Elaine Huntsinger
MG Pals Program
DID YOU KNOW???
Did you know that using www.goodsearch.com for your searches helps MGFA? Each time you use the search engine, a penny per search is donated to MGFA. Go to the site and make Myasthenia Gravis Foundation of America, your charity of choice. TODAY!!!!
If you are interested in helping with the MGnet Newsletter, please contact the editor, Kathleen Knorr at: newsletter@mgfa-mgnet.org
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Anyone outside the MGFA must submit a request in writing to copy any article. (newsletter@mgfa-mgnet.org ) The decision to allow an article to be reprinted is the sole right of MGnet. Under no circumstances may the article be placed on another web site. Permission to link to this site will be determined by MGnet upon receiving a request.
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