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The plight of many MSers is witnessed daily by friends and loved ones. These are just a few comments on their observations and thoughts. |
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2-27-06
How do I make a donation to keep this web site going or to assist people financially to attend/view the AC Hearing webcast?
Please email me the particulars...thanks and good luck!
Sarah
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2-22-06
Letter to FDA
Dear Lt. Mosaddegh,
I would appreciate if you would share this letter with the March 7 Tysabri Advisory Committee Meeting:
My name is Lisa xxxxxx. I met my husband Mike on a blind date 10 years ago on a Friday. That weekend I went on a cruise with my mother, his weekend was spent at the emergency room after a major attack and was subsequently diagnosed with MS February 28, 1995. Love prevailed and we married on March 6, 1999.
He is the love of my life but here is a sample of some of the difficulties and frustrations of loving and living with an MS patient which can put a strain on even the best of relationships. MS dictates our lives on a daily basis – what we do, where we go and for how long!
Heat – We have a lot of that living in the desert. He insists that we stay here because a large part of my family lives in xxxxxxx which I love him for, however, the summer is brutal on him.
Fatigue – This is a big one. To look at Mike you wouldn’t know he suffers from this debilitating disease. Friends and family sometimes just don’t understand when he just doesn’t want to go out of the house. Sometimes I don’t understand and then there is the guilt.
Frustration – when he can’t get his tie right because his hands won’t work or his arms won’t work when he tries to hammer a nail.
Emotional Lability – You need a strong marriage to deal with this one and a lot of patience. The highs and lows can pop up at any time.
The Unknown – Will there be another major attack, how will it affect him, and how will it affect us?
For the two months while Mike was on Tysabri, life was good. He had more energy and he was happier. We also had some peace of mind that we finally had a drug that would actually fight the disease. We need this drug back on the market – not only for Mike but for all the MS sufferers who had the opportunity to experience this new lease on life and for the others who want that choice.
Thank you for your time.
Sincerely,
Lisa x. xxxxxx |
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2-21-06
Good Morning:
I understand that you are reviewing Tysabri for use in treating Multiple Sclerosis.
I am a friend of an MS patient who was involved in a double blind study who experienced great improvement with Tysabri. My friend looked and felt wonderful but her health has deteriorated since Tysabri has no longer been available. She and others with MS (and friends who support them) very much want to see it back on the market and are willing to take the small risk involved.
Every drug has untoward side effects and risks from aspirin to ibuprofen to anticholesterol and antihypertensive drugs. Patients are informed of the risk via their physicians and medication inserts and information given by pharmacies. Please allow these MS patients to decide for themselves whether a small risk is worth the chance of taking a drug that gives excellent results and relief to them. This is an illness with devastating effects which will affect them for the remainder of their lives. They certainly deserve to choose the treatment that best affords them the most comfort and well-being possible.
Thank You.
Candi xxxxxxxx |
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2-20-06
Hello.
I understand you are reviewing the drug Tysabri for use in treating Multiple Sclerosis. I have a friend with this condition and I would like you to know what this drug means to her from my perspective.
My friend is a very optimistic, extroverted person. She has always been extremely active, involved and interested in everything. MS is very frustrating to her. She has kept a wonderful, hopeful attitude and works hard to do whatever she can to improve her situation and that of other people with the condition.
The progress of this debilitating scourge is heartbreaking to watch in someone you know and care about. The small improvements I saw when she began traditional drugs and therapy were welcome, but they were nothing like the wonderful results with Tysabri. This woman went into the research study with a good understanding that the drug could cause her condition to deteriorate, could cause other health problems, or could cause death. Knowing the prognosis of MS, she chose the 50% chance in a double blind study that she would get the "real" drug and the smaller chance that it might help her. If the drug in its current state is not perfect, continued research may uncover a way to make it so. She and many others think they should be allowed to make an informed decision for themselves about taking this risk. Looking at the odds, I would choose to take Tysabri. The incidence of developing the fatal brain condition appears relatively small; research is only way to discover what situation or combination of conditions could cause it.
Please allow the trials to continue.
Jeri xxxx
xxxxxx Healthcare
Corporate xxxxxxxxx xxxxxxxxx |
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2-18-06
Let's get the govt working harder to find a cure for MS! Controlling it is not enough for those who see our loved ones suffering!! It can be cured! We need determination and money!
B xxxxxxxxx |
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2-17-06
To Whom It May Concern:
My name is Hillary xxxx and I love someone with Multiple Sclerosis. That someone is my most special friend, my sister Heather. My sister was diagnosed with MS in 1998. At that time she was an active, 28 year old, professional woman who dedicated her time to advocating for victims of domestic violence in our community. She loved music, movies, and especially dancing. She played the role of counselor to our friends and family any time we needed her. Now she needs us.
Over the past several years she has been forced to give up so much. First, she gave up wearing impractical shoes and dancing due to balance issues. Then, due to stifling fatigue, she had to give up her job. More recently she has had to give up trips to the movies, her favorite leisure activity. And now, she is not driving due to visual difficulties and coordination issues. My sister is 35 years old and she cannot drive herself to the pharmacy or bank or post office. Can you imagine? There are days she is afraid to even take a shower unless someone is standing close by for fear of falling or not being able to get out. But most importantly, she is losing precious time with her wonderful, 2 year old son.
The purpose of this letter, however, is not to elicit your sympathy for her condition. It is to tell you that hope is not a word that comes easily off the tongues of M.S.’ers who suffer daily with unpredictable and daunting symptoms. But, last year Tysabri offered hope to my sister. She was “fortunate” enough to receive 2 doses of this drug that showed more immediate promise than any of the 3 other ABCR drugs she’s tried. During that time, my sister had more energy and optimism than I had seen in years. As you know her “fortune” in receiving the drug for such a short time, was robbed the day it was pulled off the market and she called me in tears.
What I want people at the FDA to understand is that these people like my sister, a young mother, are desperate. They are desperate to maintain function and independence. Tysabri can help. An effective therapy is a dream for individuals who have seen substandard results with other available medicines. Many of these people have educated themselves about why it was pulled off the market and are willing to be informed about its possible risks in order to make an informed decision about whether to take it. Please, don’t delay the release of Tysabri any longer. A few months can make a big difference in the life of my sister. Gather the facts, release the information, and give us back our drug of “hope”.
Regards, Hillary xxxx, M.A., CCC-SLP |
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2-15-06
My name is Sandi, and I have followed the debate over the use of Tysabri because I have a niece, Heather, who has been seriously affected by the discontinued use of this seemingly helpful drug. We watched her do so well during the brief time she was allowed its use. Now we see a regression without Tysabri. We all pray every day that it will be brought back for MS patients. We also pray for continued research to help MS patients around the world |
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2-14-2006
The FDA must give people with MS the right to choose a treatment option that is right for them. Informed adults making informed choices is the right of every human being, and this is especially relevant in the case of people who live with the debilitating effects of MS. Tysabri may not be the right choice for all people, but it is the right choice for many people and is a choice that is making life changing impacts.
The FDA must do what is intrinsically right and that is giving the choice to use Tysabri back to the individual. The FDA has done their job by identifying the possible risks with this treatment. It is the job of the MS sufferer to make the informed decision whether Tysabri is the right choice for them.
Allie xxxx
xxxxxxxx, OH |
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2-13-2006
Great WEB site, thank you for speaking out on the behalf this great drug (tysabri). The drug changed the life of a dear friend! We all thought, wow this IS the miracle we were all praying for.....and wow was the wind lost from her sail when it went off the market. A very sad day indeed.
Giving an MS patient the choice would be the beginning of a 2nd miracle!
Beth |
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2-13-2006
My name is Ernie xxxxxx and I live in xxxxxxx, Arizona. My good friend Mike is an MS patient and was thrilled when Tysabri was approved. In fact I was honored by his request to accompany him and his wife Lisa to Mike’s first infusion.
I met Mike and his wife, Lisa at an oncologist's office where he was to get his first infusion of Tysabri. I watched as the nurse prepped his arm and began his infusion of 30ccs of Tysabri, along with a few mgs of Benedryl all combined with a liter or so of normal saline. The infusion took about an hour, including an extra few ozs of normal saline to 'wash it down with'.The benedryl seemed to have the most pronounced effect, the typical antihistamine drowsiness that affects many people. However, it wasn't sufficient to deter Mike from wanting lunch. We enjoyed a very nice lunch and made our separate ways home.
Mike had been skeptical of the almost instant beneficial effects reported by some of the first commercial patients, he was soon to become a believer.Along with his MS, he had been a long time sufferer of Rheumatoid Arthritis, particularly in his knees. In a day or two, he told me that his knee pains had subsided and they felt better than they had in years. Made me jealous, I have R/A in both knees!Anyway, in the days than followed, Mike became an MSer without MS. He was able to get is second infusion, but his third was scheduled for the very day that Tysabri was pulled from the market.Mike is a very savey MSer, he had taken most of the other CRABS and knows their side effects very well. He also knows how little they improved his condition. When he read about the PML issue, had a chance to see the numbers, and gauge the risk, he said he would gladly sign any waivers to get HIS Tysabri back.I know that Mike is not alone in this sentiment, there are several MSers that I am aware of who feel exactly the same, 'Bring back our drug'.
The disease afflicts individuals, not governments, the informed risk belongs to the individuals, not governments and the drug should be available to informed patients, that is the government's duty.
Allow the patients their choice!
A friend,
Ernie xxxxxx xxxxxxx, Arizona |
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2-12-06
Hello,
Bravo! Excellent website. I have sent an email message to the FDA. More voices must be heard. Please add my name to your list, my email address is …..
David, xxx xxxxxxx, California |
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