Closing out MG Awareness Month

Thank you to everyone who took the time to read some posts and/or learn about MG this month. I, and everyone else with MG, appreciate it! Today I'm just going to link to some past posts where you can read to learn more... and please do. We need awareness so that we no longer hear "it's just anxiety", so no more lives are lost and so that we get the funding needed in hopes of finding a cure.

Central line placement/Plasmapheresis

Thymectomy/Surgery

Driving with MG

How "simple" things affect us with MG

An Analogy

We can't get sick

Wheelchairs and more

Breathing Trouble

MG Simplified

For Friends, Family and Caregivers

MG Story 7: Family, Friends and Caregivers

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to the person who contributed this story. This story in particular touched me so deeply. It's because of the situation I was placed within and those who chose to leave me and those who chose to remain with me. I am so very thankful for the ones that walk through this with me and don't run away, for the ones who help me especially those who help me every single day. We with MG can never run away, and we need your help, your support and your prayers. Thank you.

"When you get a diagnosis of a debilitating incurable disease, it affects not only the patient but the patient's entire family. The role of caregiver takes on new meaning and everyone has to shift their schedules, plans and priorities to meet the needs of the patient.

I could not do this without my wife and her support. I love her dearly and it frustrates me that not only am I fighting MG, but so is she, even though she is not sick. She has now realized that it all depends on what I have the capacity to do and not what she would like me to do.

Many caregivers care to excess and they do get frustrated with MG and the highs and lows associated with the disease. You can be fine one moment and in crisis the next. They want us to do more. Their thinking is it will help when in reality it may do more harm. With MG only the patient can assess their current condition and what they can or cannot do.

When you support MG, be an advocate, not a counselor. You cannot know what it is like, but you can be aware and empathetic. We do not need sympathy or feelings of guilt. These expressions only serve to heighten a battle of depression that we are already fighting because of MG. On my part I want to remain positive and express my appreciation for all the service I get from family and friends.

We are not lazy. We fight MG with everything we have. It just happens that we have excessive fatigue, pain, medical side effects, and weakness.

So I want to salute all those people who render assistance and support to their family or friend who is fighting an illness where there is no cure but there is hope. You are God's angels on earth and we love you for it."

MG Simplified

Myasthenia Gravis (MG) is not only hard to say it's hard to understand. It affects every single one of us so differently which is why it's called the snowflake disease, because no 2 snowflakes are alike. I'm going to try to simplify it right now so everyone can understand what it is happening to us that you can't visibly see.

MG is an autoimmune disease which means our bodies attack our own bodies. Depending on what disease it is determines what part of the body our bodies attack.

MG is a neuro muscular disease. This means the part of the body our own bodies attack is the nerve/muscle area.

In every person there is a chemical being sent from the nerve to the muscle... when it works properly, that neuro muscular junction works as it should. The muscles move how they should. You don't have to think about when you walk, talk or breathe, you just do it.

With MG, our bodies are specifically attacking that. The more we use any certain body part, the more it attacks it. This means that less of that chemical is reaching from nerve to muscle, which in return means not enough to make the muscle work properly. That is how we have weakness.

This includes legs, arms, core, face, eyes, throat and diaphragm. So this means walking, driving, using a computer, talking on the phone, having a conversation, reading, swallowing, chewing, smiling, breathing... to name the most common.

MG is unlike the majority of other things as society as a whole is taught to push through it. "Pushing through it" to an MG'er means temporary paralysis. If it paralyzes the diaphragm, it's bad news.

For example, I can start off on a walk walking just fine looking like hey I can walk 3 miles. But after let's say 200 feet, my muscles don't have enough of this chemical getting through to keep working. I am forced to rest, so that my body hopefully stops attacking my leg muscles, so I can walk back.

Another example, if I am outside and it is humid, my diaphragm is working harder with every breath in and out. Breathing is extremely labored. If I do not go into an air conditioned room and allow my breathing to become less labored, my diaphragm will stop, yes, it will stop. Way too many people have been on the ventilator and some have even passed away. It is SO important to stop while we are ahead or it may be too late.

Last example, stress. Stress works just like physically using the muscle works. It attacks, but typically it will attack the whole body. This is why eliminating stress as much as humanly possible is not an option but a necessity. Sometimes I will just have to remove myself from a situation or not go somewhere or not have a conversation because the stress of it is not worth landing in the hospital. This is not a mental thing, it is a physical attack on us.

Healthy people rest after they get tired. MG'ers must rest before AND after and for a much longer period of time. We need to store up, we need to replenish, we need to conserve.

The less we use the muscle, typically the more we have to use, which I know is so backwards, but it is what it is. So we are forced to conserve our energy/strength/use of the muscle in order to make it through a day, an hour, or even one simple task. We are forced to pick and choose what to use this small amount of muscle usage we have in us on. The more we rest, typically, the more we have stored up to use, but it diminishes fast. This is why we must rest more often than not in order to make it through each and every day.

If we were all at a carnival this is how MG would work. Healthy people or those who do not have MG have the unlimited ride wristband. You can do whatever you want without thinking about it. Those with MG are given 20 tickets, for the whole day. Some things cost 3 tickets, some 5 tickets, some 7 tickets. We have to pick and choose what to use these tickets on. When we run out, our fun time is over. Time to rest and recover and that may take minutes, hours, days or it may take a trip to the hospital with emergency treatment.

Yes, we look fine. Yes, for 1 minute, 5 minutes, an hour, maybe even a whole day, we can function fine. But that runs out rapidly. So when you see us, please don't assume because we look fine or are functioning at that moment that we are fine. We aren't. We probably rested for days or hours just to be doing whatever it is we are doing at that moment, even if it's a simple few minute task. This is how we must live our lives in order to remain living. It's confusing and it's why we need awareness. 

Thank you and God bless!

MG Story 6: A Video to Watch

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to an MG friend who shared her story in a video. It let's you see a little bit of MG instead of just reading about it. Thank you!

MG Story 5: Understanding MG

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to the person who contributed this story.

"I was going to start out the month on a more upbeat note, but this is where I am. One of the realities of MG is that other people will never understand it unless they have a chronic disease of their own. People see what they want to see, hear what they want to hear, and assume what they want to assume. 

On May 28, 2014, I had to call 911 and go to the ER. It turned into the worst MG episodes I have had in 17 years. The next day, I posted an email to friends explaining what had happened. 

One friend responded with a 'what can I do?' message; another responded with a 'glad you are ok' message. Is there a disconnect? Absolutely. 

This is perhaps the most frustrating thing about living w/ MG or any other chronic disease. People will never understand that MG is a daily struggle, some days a struggle to breathe. That is what sent me to the ER. I was not admitted to the hospital because my neurologist assured the ER doctor that I was capable of monitoring my own condition. Some people took my returning home as 'He's fine.' Quite frankly, after all these years, I have given up on getting people to understand what life w/ MG is like. They either get it or they don't. 

But those of us in the MG community know that MG does give us good days, does give us days that scare the [poop] out of us, and, yes, even gives us days that kill -- and by kill, I mean we [can] DIE from this disease. It is not just an 'oh, you had a bad day' illness. It is a lifelong struggle."

MG Story 4: The Real Story

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to the person who contributed this story.

"I have always been an active woman. In my earlier years before having children I was working 3 jobs. I learned my work ethic from my Mom, Daddy and my Aunts. Roll up your sleeves, and you do what you need to do to get the job done. I played as hard as I worked. I deserved it! I was often the life of the party. I am a complete attention hog! LOL! Always laughing, dancing, singing (off key of course) and over all having a great time. I married, had my girls, and not too much really changed. I was still silly, loud and loved to run and do things. The social butterfly. I LOVED playing the hostess. Throwing get togethers for family and friends.

Then just over 3 yrs ago my life changed dramatically. I began having blurry vision, and my hands would "lock" and I had limited mobility of my fingers. Then it was my arms, suddenly I had difficulty walking, like someone tied weights to my legs. I shuffled along like I was 89 not 39! Then I fell while trying to step off of a curb. There I was laying face down in the middle of the street in downtown Cleveland without the strength to pick myself up. I was terrified! You cannot imagine what was running through my mind. Am I going to be paralyzed? What will my family do? My mind was spinning. The next day I went to my PCP, he asked me literally on 3 questions and then mentioned an auto immune disease called Myasthenia Gravis. "I believe this is what you have Jennifer. We are going to run a few blood tests, MRI and get you set up with a neurologist" My only thought was I have mya whata? Again, my head began spinning.

I immediately began researching MG. Boy, what a joke that turned out to be! There was very little information on the internet and what was there is barely accurate. You see, MG is really not a disease that can be "pegged" into little holes or boxes. I read that patients that suffer from MG can live a "normal" life. Normal life. My normal? The life that I had before began sick? The care free life I was used to? The one that I could make plans with the people I care about and not worry about disappointing them because I have to "flake" out on them? It is hard to play the hostess when you never know if you have to cancel at the last minute on the party due to a MG flare. I quickly learned that if I wanted to know about MG, I needed to speak to those that experience the same things that I do. Find out about as many different treatments as I could. I had to learn that if some event was important to me I had to rest to "store" up enough energy so that I could attend. I had to learn how to let others take care of me. I no longer can do house work. I NEVER EVER thought I would complain about that, but there it is. I would give anything to be able to do my own laundry again. I learned that I use the energy that I have to accomplish as much as I can in the time that I have that energy. Like making meals for my family and freezing them all at once.

The most difficult thing for me during the journey is redefining my idea of "normal". I am still working on that. I am beginning to accept that some things are just out of my control. I remind myself that those that love me do not judge me for not doing the things that I could before. They are still disappointed, and sad, I can see that on their faces. That is heartbreaking to me, but I hope to one day be able to forgive myself for that heartbreak. I miss me. The one that danced all night, the last to leave the club. The me that was up for any kind of nonsense. The spontaneous Jen. The carefree Jen. She was fun. She was happy.

I did not write this as a way to have a pitty party or to have everyone tell me it is ok. This is very cathartic writing this out. I also hope to spread awareness and acceptance for those that suffer from any type of invisible illness. I really hope that it gives each of you reading these words pause to think of your definition of "NORMAL".

Thank you for reading.

Love and God's Blessings to you all!"

The reason behind the need- breathing

I stay in a lot because it's easier than going out. I never take the easy way out, but here if I don't choose "easier" that means I choose "harder" and when harder is in reference to your survival, it's not something I like to risk.

I stay in a lot because I have needs that others would see as privileges or options. I have needs that can't always be met if I go out, and even when they can be met, sometimes people don't understand or follow through. I have needs of a different way of living that others aren't accustomed to. Because of MG, they are in fact needs. If I don't have them I take one more step in the direction of the hospital. Allow me to explain, please read to understand the reason behind the need.... specific to breathing.

There is a breathing test at the doctor's office that measures your MIP and MEP. Basically it measures how strong your diaphragm is (the muscles surrounding your lungs which allow you to breathe in and out). The closer to 100% the better. Normal is at least above 60% for one and at least above 80% for the other. Well I am anywhere from 20-45% on both, depending on the day. That is bad, really bad. And I feel it, some days more than others. Some days all I can do is merely lay there and breathe. Just breathe. Because it takes that much effort. Like an elephant sitting on my chest or the most tightly wrapped band wrapped around my chest and abdomen over and over and over and over. Each breath is an effort. So to reduce that effort whenever possible, I need...

Air conditioning- Even if I am cold, I need air circulating and I need it to be cool. First, heat makes MG worse, so that's important. Sitting outside in the sun or heat is bad and I can't do it. But second and probably more importantly is the effort to take in a breath. If air is circulating it makes it easier to take that breath in. If air is stagnant or humid, it becomes more of an effort than that already 20-45%... even on a "good" day. If I remain in a hot, humid, stagnant air room for more than a couple minutes I near closer to a hospital visit the longer I remain without that air. I've asked for oxygen, at least for overnight, but of course the way insurance works they won't cover it unless my oxygen saturation drops below 88% while they are monitoring it. That's ridiculous. Anything under about 95% is not enough oxygen as it is. I measure it myself below that regularly. But of course when in the office and those 30 seconds they measure it, it's fairly normal.

Elimination of Allergens/Dust/Animals- Anything I am allergic to makes it again more difficult on top of the already difficult breathing. These days it seems I am almost allergic to life. For us with MG allergy doesn't mean a little sniffle. It means breathing trouble and as you read above, anything that affects breathing is extremely dangerous when its already so hard to breathe. So mold, pollen, weeds, grasses, flowers, cats, dogs, rabbits, feathers/down, dust... these are all triggers, some more than others. Yes I do still want a dog so so bad but a hypoallergenic one, and I'm apparently not allergic to dogs even though my body says I am. I also learned those allergy tests don't nearly pick up everything so it makes more sense to listen to your body than a piece of paper. Anyways, getting off topic.. other triggers include perfumes, colognes, cleaning supplies, static/dryer sheets, hairsprays... pretty much anything that is not natural and even many things that are. Roses used to be my favorite flower and now I'm allergic. Tulips seem to be the only ones I can tolerate at the moment. So, that's a lot of things to avoid there because the vast majority don't think of their perfume or these other "little" things being harmful to others, but they are.

These accommodations will help us with MG breathe a bit easier. It will still be hard if MG affects our diaphragm but it will at least help prevent a trip to the hospital.

I feel it's very important to get this word out there about MG, chronic illness in general and specifically an invisible illness. People tend not to believe what they can't see. But we need to be aware there is more to it than what you see. We need people to understand why we look fine but aren't fine, why we need accommodations, why we need awareness, and why we need a cure. MG is serious. MG can kill. It's blunt but it's true and we need people to know it. Thank you so much for reading and helping to spread awareness. God bless.

MG story 3: Life Changing

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to the person who contributed this story.

"The following is raw & from my heart. I'm posting to give the one's I love a glimpse of my reality, no sugar coating. I'm posting for others who have/are currently walking my steps know, you are not alone. I do have happy days, Faith, hope for remission. I'm not looking for sympathy I'm just sharing from my heart:

Once upon a time there was a girl who climbed trees, danced in the rain rode her bike on long adventures, she swam in the Great Lakes, fished, and played hide and go seek until after it was dark. That little girl grew up and she worked hard, she was a busy wife, she was a busy mom, she was a successful career woman, she volunteered, she loved to sing; even on stage, she was not afraid to speak to crowds or strangers.

Many times strangers became friends. She was very social and very active. She went to the gym at least 3 times a week, she took her kids on spontaneous adventures, she took trips, she cooked, she cleaned, she kissed boo-boos, she loved having people at her house and many came over often.

One day that woman fell and strange things happened to her eyes. The doctors shrugged, they didn't know why. Soon after, a stroke they thought she had at the young age of 31. Alas, after many tests, they were wrong, but she was determined and wouldn't give up. She had two children she adored and a husband who she not only loved but was also her best friend. She had friends and clients who relied on her. She knew there was an answer and she was going to find it.

6 months later a name was given to my disease - Myasthenia Gravis.

It's now been 5 years and I continue to decline. Still strong in the head but weak in the body. I won't give up. I love too many people to give up. I love my husband and kids too much to give up. I love the amazing friends I've made fight this illness to give up. Most days I keep my chin up. I go to events and cheer on my kids. I go to family gatherings and chat. I've spent countless hours with newly diagnosed patients...walking them through treatment options, ways I've learned to live more comfortably with this disease, reassuring them that I personally know people who have had remission.

But if I'm honest, if I'm raw and brutally honest. .. I'm tired of the medicine. I'm tired of the side effects. I'm tired of the weekly IV's. I'm sick of canceling plans. I'm exhausted from all the long hospitalizations. Hospitalizations that bring many unknowns, new doctors, complications. I'm scared.

I'm currently on an experimental chemotherapy treatment. It makes me sleep, throw up, forgetful, and not feel like me.  I've suffered from some pretty severe side effects after my August dose - including extreme fatigue, nausea, a 45 day long migraine the severity of which no word exists, severe memory loss, and depression. 

5 years ago life as I knew it ended. The strangers I meet are insurance reps on the phone...doctors, nurses, respiratory therapists, and patients. I miss me. I miss my life. I miss driving. I really miss singing. I miss cleaning. I don't look like me. My house doesn't look like mine. People stopped coming over years ago. I'm in the hospital so much, with each stay, less people visit. My last stay I was in a coma, on life support. More than anything, I'm sad that my kids miss out on events because of me. Or they participate, but my face is not in the crowd. Don't get me wrong I'm there when I can be. But the decline seems more rapid and the doctors eyes are more sad as time goes by. The neurologist I trust most patted my knee last time he saw me, I saw the fear in his eyes when he said 'we're running out of options.'

This is my true story. I won't give up on me. I won't give up on you. I won't stop laughing or making my friends and doctors laugh. As long as I am here I will keep fighting for remission. But I wanted to let you know what it's really like.

This is one of the hardest things I've shared, but it's true."

MG story 2: Not Normal

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to the person who contributed this story.

"People who are trying to understand what MG is, are always telling me that 'at least with medication and treatment I have read that you can be normal.' This drives me crazy. I have not been normal for years! 

I cannot walk without assistance. I cannot eat certain foods I used to love because I cannot chew without fatigue and swallowing is so difficult it takes real effort and pain. I cannot speak for more than a few minutes before I start to sound like a drunk. I have to have oxygen 24/7 because my diaphragm is so weak I do not get adequate inspiration. 

I had a Thymectomy that they were sure was going to put me into remission. It has been three years with no results other than a nice scar. I spent 5 entire days each month in the hospital getting IVIG infusions. I take a total of 22 different meds a day to treat this awful disease. I usually have 5-6 crises per year in spite of all this treatment to make me normal. This requires ventilation support and plasmapheresis over a ten day period. 

I have to avoid crowds and people who are sick because of my high risk for infection. When I do get sick it is life threatening. For me it is not just a cold or flu that people accept and after a few days are better. I can be seriously ill for weeks. 

I cannot climb stairs. I have trouble holding simple things like pens and spoons. I can no longer do things that I once enjoyed. I had to sell our ranch and my beautiful horses. I have had to give up my job. I am now on disability. My vision is double most days and when fatigued I cannot even get one of my eyes to focus. I have prisms in my lenses and sometimes need to wear an eye patch to allow me to see anything or to rest my eyes. Now my doctors tell me my condition is refractory and the medicines are no longer working to my benefit. I could go on but I think this makes the point! 

What about this is NORMAL???? Ask my wife if she thinks I am normal or even if she feels as a caregiver that her life is normal. [...] A diagnosis of MG means that your life as you knew it is pretty much over. We will never be that kind of normal again. The misinformation on the internet is written by people who may be learned but I guarantee [they] have never had MG. 

June is MG awareness month. Take the opportunity to use your influence to educate those you have association with about MG and how this disease has required each of us to redefine our lives and set new normals for everything we do! I realize that each person's experience is different [...] This is a serious illness with sometimes devastating symptoms that bring about real disabilities. For some they are mild and respond well to treatments, but for people like myself they are severe and we have to live each day by each moment."

MG story 1: Pay to Play

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to the person who contributed this story.

"MG is a roller coaster. You can feel fine one moment and, SNAP, you are in trouble; you can be in trouble and, SNAP, you are fine. The chaotic nature of the disease is probably what is most difficult to live with. You feel fine and you commit yourself to something. Then you crash and can't keep the commitment. You feel terrible and decline an invitation, and then when the time arrives you feel find.

Another problem is that people judge you by what they see. So if they see you on a Tuesday at 2:30 pm, they will tell people you are doing well. The reality is that you were, but it is now 2:45 pm and you are struggling to walk or breathe. Or they see you at 4:45 pm on a Thursday and you are in very bad shape. They tell people you are not doing well at all, so someone checks in on you at 5:45 pm and you are just fine. I know this must confuse people.

I am almost 18 years into this disease and still don't like it, still haven't fully adjusted to it. This makes me very aware of how tired people who know me must feel. Let us face up to a very real fact: People are very good dealing with a disease where you either get well or you die. Most people don't have the skills to deal with a disease that will not go away, a disease that confounds you and them.

Over the years, I have tried to improve the way I respond to others when they ask me how I am. I still fall into the old 'I'm fine' when I'm not. I still don't know if people want an honest answer or not. I still don't know if the truth will set me free or lock me up. I still don't know if anyone other than someone else dealing with a chronic disease that will not go away will ever understand.

So where am I? I love life, I am a happy person, I struggle with this [darn] disease but try not to let it dictate my life. Am I ever emotionally down because of MG? [Heck] yes. Do I stay down? [Heck] no. I live with the reality that MG affects every decision I make, be it medical or social. My always question: Is this worth being sick tomorrow? So, when you see me out and about, it is because I have decided that the event or you is worth the risk of being ill the next day or so. Pay to Play is a concept I understand.

Finally, I could not live with this disease alone. The small and major things people do for me make all the difference. I will be forever grateful for the gifts others give me of their time, of their ears, of their hearts.

Although this is not the life I wanted, it is the life I have been given. So I say, LIVE IT, LOVE IT[...]Now it is time to find a cure."

Yes you can!

June is Myasthenia Gravis Awareness month. 

For those who have asked me at one point or another or many times, "Is there anything I can do?" and I never really had an answer. I have an answer now. Yes! There is something every one of you can do, and I ask that you please do it!

Please help spread the word. Share this blog (share button to the right). Share that picture. If you have facebook, go to my profile, pull that picture above which I have set as my top photo, and set it as your own top photo for the month of June!

Many of us who have MG plan to flood awareness this month. Please don't mind it, but rather join in and help. If you had a serious but extremely rare illness that no one knew about and was hard to understand, wouldn't you want to get the word out? We will appreciate it so much so!

Yes I still have Dysautonomia/POTS among other things but this month the focus is MG. This month I am going to try to share stories from others who have MG. My purpose is to show you more than just my experience with this. It's to show you the battle we walk every single day of our lives. 

It's to show you when you see someone who "looks fine" they may actually be far from fine. They may have a huge scar through the middle of their chest from a thymectomy. They may have several small scars or a central line still in place from plasmapheresis treatments. They may have just come from the doctor where they were told there was nothing wrong... or worse, there was nothing left the doctor could do for them. They may have been on a ventilator. They may need oxygen or a bipap machine every night, or even during the day. They may have several other diseases like me which only complicates things. They may have been abandoned by family and friends who no longer have the patience to care for them. They may be in a tremendous amount of debt from medical bills because they can't work and have been turned down for disability. And some, sadly, you won't see, because MG took their lives. 

Rare does NOT mean less serious. Myasthenia Gravis is both rare AND very serious. We need people to understand that. We need support. We need doctors who know how to treat this. We need medications that work. We need a cure. Let's all take the first step in finding that cure by flooding social meeting and anything else you can think of this month with Myasthenia Gravis, MG, with everything teal (the awareness color). Let's make it known this is serious and this needs attention NOW, before another life is taken by it.

Thank you and God bless.