Dawn DeBois

@dawn-debois | contributor
Florida born and Maine grown, my life has been atypical. Suffering a very early loss of my young mother when I was 4, I started the path less traveled. My first autoimmune diagnosis was at the age of 28, which has led to juggling multiple autoimmune diseases (Hashimoto’s, Fibromyalgia, Ankylosing Spondylitis, Psoriatic Arthritis and most recently LEMS- Lambert Eaton Myasthenic Syndrome). I am officially now classified as having “Multiple Autoimmune Syndrome.” You know what they say, go big or go home! I blog about invisible illnesses, having multiple autoimmune diseases in my blog, The Battle Within and write a weekly column, LEMme Tell Ya, about living with LEMS for the LambertEatonNews.com. Writing is my outlet; and writing about my experiences, to help others, is my goal! I am currently helping to start a patient advocacy group for other LEMS patients so that they don't feel they have to face this extremely rare disease alone. I reside in Bangor, Maine with my two rescue dogs, Rocky and Anna and my orange tabby, George, and little tuxedo kitty, Wylie. Through an amazing organization, Global Genes (look them up!) I've been able to connect with other LEMS patients and we are on our way to starting a LEMS Foundation. Please feel free to reach out if you would like to have a community who understands your diagnosis. Click on the FB or Twitter icon below this and you will be able to reach me there :)! God Bless!
Dawn DeBois

When Lambert-Eaton Myasthenic Syndrome Was Featured on 'House, M.D.'

When it takes Dr. Gregory House to diagnose a patient with the same illness you have on the series “House M.D.,” you know you have something very rare. In season 1, episode 18, “Babies and Bathwater,” there is a pregnant woman with odd symptoms that no one other than Dr. House can put together into a diagnosis. House tells them to look at her eyelids (LEMS affects the eye muscles and sometimes one eyelid droops). There is also a scene where she chokes on a wet, cooked piece of pear (LEMS can cause swallowing of the simplest thing to become impossible if it starts to affect the autonomic system). When the doctors look at her, they explain that her immune system has attacked various parts of her body and is now attacking her nerves. They tell her she has Lambert-Eaton myasthenic syndrome. I can’t help but think back to being in that very same conversation, one year ago this month. For years I had odd nervous system symptoms such as numbness that would come and go over different parts of my body, extreme exhaustion, no ability to build muscle, rapidly deteriorating vision and I constantly had severe dry mouth. Not one single doctor could diagnose me. My prior neurologist thought perhaps I had one episode of sclerosis based on her MRI findings (vs. multiple sclerosis), and my primary care provider kept giving referrals to new specialists.   When one such referral, to my new rheumatologist, resulted in me starting treatment for my recently diagnosed psoriatic arthritis, things started getting progressively worse. My odd symptoms started to flare horribly. My legs were numb. My face would often go numb in areas that corresponded with the trigeminal nerve, and suddenly I was having issues swallowing. I reached out to my rheumatologist about these odd side effects and she quickly told me to stop taking the med she had prescribed and to get in to see my neurologist ASAP. It was then that I first met with my very own “Dr. House,” who started down the path of many diagnostic tests such as another MRI and a spinal tap. Having a 12” Harrington rod fused in my back makes both procedures unpleasant. Lying flat on my back for the long MRI had me in tears due to it being so uncomfortable; the magnetic waves affect my nerves during the procedure, causing one of my feet to constantly feel like it’s kicking. That was a piece of cake, however, compared to the spinal tap. Having a fusion, rod and arthritis in one’s back makes for the need of a radiologist to be on top of their game. Unfortunately, this one was not and I ended up having a traumatic spinal tap, which led to a spinal migraine for 10 days following. My back fusion, once again, wouldn’t allow for me to have a “blood patch” to stop the leak of spinal fluid from the spinal column. As painful as all of the procedures were, I was grateful to Dr. Unia for looking as deeply as she could at everything to see what was causing my weakness, numbness and other confusing symptoms. I remember full well sitting across from Dr. Unia discussing all of the results from the prior tests. Nothing had come back with an answer (such as multiple sclerosis). She looked at me and said, “With your severe autoimmune history and all of these tests coming back negative, I’m beginning to think you have an autoimmune disease attacking your nerves.” She then explained that the test we would need to do was a $1300 Mayo Clinic blood panel we would need to get an insurance prior authorization for. The prior auth was done and then the blood was drawn. For three weeks, I heard nothing.When the phone rang and Dr. Unia was on the other end, she told me the results. She said, “Your calcium channel N-type antibody is high,” and her next breath was, “Don’t freak out after you start reading about it on the internet.” She went on to say that what I was dealing with was extremely rare – so rare that most doctors never have a single patient with my disease, Lambert-Eaton syndrome. At any given time, only approximately 400 people in the United States are diagnosed with LEMS. The reason Dr. Unia made sure to tell me not to freak out when I read up about it on the internet was because about 60 percent of LEMS patients have underlying cancer, often small cell carcinoma, causing the disease. The other 40 percent are found to have it due to severe autoimmune dysfunction. Due to my overabundance of autoimmune diagnoses as well as my monthly blood work never coming back with any concerning markers, Dr. Unia felt confident that mine was the type that didn’t have any underlying malignancy. Also, my symptoms had begun at least five years prior. When a malignancy is a cause of having antibodies attacking your nerves, cancer usually makes its presence known within a few years. However, we still needed to do a chest to pelvis CT scan, just to make sure. Once the CT scan was done, confirming no malignancy, the first line of treatment was set. This was the most intense loading dose of methylprednisolone, given intravenously to try to suppress my immune response, at Cancer Care of Maine. For five days in a row, 1000 mg of this medication was infused via IV into my bloodstream. I had no idea what I was in for. From the weird metallic taste that took over my mouth within a few minutes of the infusion starting to the absolutely ridiculous increase of my senses’ sensitivity, I was in for a wild ride. I couldn’t have gotten through the infusions without my tunes. On the fourth day of treatment, I couldn’t see well when I looked across the lobby from the elevator. It scared me beyond words. Each day the infusion nurse would ask if I had any side effects from the treatment. On that fourth day, I burst into tears when asked about the side effects and I told her about the vision changes. My nurse immediately called Dr. Unia, who replied that I just had to get through those first five treatments. So, armed with a bag of mini peppermint patties to mask the metallic taste, I carried on with my treatment. The last day of treatment I was put in an infusion room that didn’t overlook the parking lot but overlooked gorgeous trees instead. I took my glasses off, because I couldn’t see well, and was shocked when I could see the detail on each of the leaves through the windows! My vision had changed, yes, but for the better! To say I had no idea what I was in for with the treatment was the biggest understatement of the year. My body being “juiced” was one I didn’t recognize. The glands in my throat were swollen and painful due to the retention of water. I couldn’t think straight. I couldn’t stand the sound of my own breathing and swore I could hear my neighbors’ conversations, coughing and sneezing. Thankfully I had decided to board my dogs and the kennel had the space to keep them until I was feeling better. My vision was nothing like it was prior to the infusions so I had to dig out a very old set of glasses to try to see as my current glasses were far too strong. The worst part was, for some reason, the infusions made my LEMS symptoms much worse. The numbness was horrendous and my episodes of not being able to swallow scared me into only sucking on popsicles, drinking smoothies and having soup for days. I cannot tell you how grateful I am to have helpful neighbors and great friends who helped with picking up things I needed at the store when they realized how sick I was from the steroid infusions. It certainly takes a village. Once the infusion onslaught tamed, something pretty exciting happened. The inflammation my body had been fighting in my neck and back for years was gone. I could relax my head on the back of my chairs and I could turn my neck side to side with ease. These things I hadn’t been able to do for years prior. Then, the side effect of euphoria that can happen with infusions came along. I was so happy to be out of pain, to have my vision improved so much and then the energy to clean, organize and write all hours of the night. Through all of this, the water retention from the steroids was horrible, but I was feeling a bit better once the LEMS symptoms relaxed again. When the next infusion treatment in November of 2016 once again brought about the extreme exasperation of my LEMS symptoms, I started doing research on my own disease. When you have a rare disease, you have to be your own advocate! My neuro was wonderful, but since I was her first patient with LEMS and only one patient of her enormous caseload, I started researching alternate LEMS treatments. With the help of a worldwide Facebook group for LEMS patients (that has only 533 members currently, many of which are family members of LEMS patients), I learned about the efficacy of treating LEMS with other types of medication. Many conversations and emails later, my neuro agreed to pursue the path of treating me with the trial med along with the methylprednisolone which I had started in January 2017. She had to first gain the support of the hospital she works for. There is no quick process and it took seven months from the request to me finally starting on one of the new medications in June of this year. Now that I am on a treatment that is minimizing the symptoms and allowing my muscles to work properly, it makes having such a rare illness even more interesting. I look healthy now, so when going over my medical history with new providers it brings a lot of questions. One provider actually told me they vaguely remember reading about LEMS in a paragraph in med school. My med list is extensive and I have to let them know about the new medication I’m on which isn’t in any prescription database because it is not yet FDA approved. I have to educate each and every new medical professional that I sit in front of. Thankfully health education is what I went to college for! I do have anxiety about something happening causing me to not be able to access my current medication that I take at least every six hours. My family knows where it is stored because it cannot be just ordered from a hospital pharmacy. I recently ordered a new medical ID bracelet called MyID that actually allows you to store all of your medical information that can be accessed from the web or QR code in an emergency situation. There is a long, extensive list of meds that I cannot take due to what those meds can do to muscle reactions. Most providers have little to no knowledge of LEMS, so I need to make them aware, especially if I’m in the situation where I cannot communicate. Living with a rare disease that takes a doctor as skilled as House, M.D. to diagnose is not easy. However, living with such a rare disease that is undiagnosed for years is much more difficult. When I met with Dr. Unia soon after my diagnosis of LEMS, I couldn’t stop expressing my gratitude to her for not giving up. For years there was no explanation for my confusing and progressive symptoms. I knew it wasn’t all in my head, but there were no answers as to why the symptoms were there. To finally have a specialist find the reason for your symptoms is as exciting as finding a map when you’ve been lost for years. There are many paths to choose, but at least you know where you are starting from. One year after my rare disease diagnosis and having treatments that work for me, I snapped this selfie on my way out the door to a meeting to discuss my blog. Life couldn’t be sweeter. This post originally appeared on The Battle Within. We want to hear your story. Become a Mighty contributor here. Lead photo courtesy of House Facebook page

Community Voices

What’s IVIG all about anyway? #IVIG

<p>What’s IVIG all about anyway? <a class="tm-topic-link ugc-topic" title="IVIG" href="/topic/ivig/" data-id="5b23ce8e00553f33fe995465" data-name="IVIG" aria-label="hashtag IVIG">#IVIG</a> </p>
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Jasmine Duckworth

What to Know This Myasthenia Gravis Month

June is Myasthenia Gravis Awareness Month. Every June for the past five years, I’ve thought about writing something but always come up short, because what is worth saying? Should I share my diagnosis story? Should I try to detail all the ways myasthenia gravis has shifted the direction of my life? Should I list the symptoms so people might be better able to recognize it in themselves or others? Having myasthenia gravis means sometimes I use a cane… My diagnosis was swift and too long ago to matter. My life has shifted considerably but that is relevant to no one but me. You can Google symptoms and find an exhaustive list. Those things are not worth sharing today. The awareness I hope people gain is that not all disabilities are visible. Not every illness has a cure. Pain sometimes just persists. That’s the way it is. Sometimes I use a walker… Recognize there are people you pass every day in your regular routines who are carrying heavy loads that go unseen. Don’t judge the person using an accessible parking space who looks “fine.” They may be able to make it into the store but are unsure if they’ll be able to make it back, and know that saving those few extra steps might make the difference. Don’t begrudge that woman you see take the elevator even though it’s only one floor. Maybe she can walk fine on flat ground but not up stairs. Sometimes I wear sunglasses indoors Don’t assume that man is using the accessible stall in the bathroom because he just wants more space. He may not be able to get up off a toilet without using grab bars even though he looks no different than you. Don’t accuse that young person of faking it, or carrying a cane just for attention. They may never know when their legs might fail and drop them to the ground. Sometimes I get infusions in the hospital Don’t give the stink-eye to that teenager sitting in the priority seating area on public transit. He might be barely able to sit upright today, let alone stand. Don’t assume that lady in the checkout line is a bitch because she seems unfriendly and impatient. She might be in excruciating pain and is just trying to survive the day. Sometimes I do my infusions myself as I run errands Realize that not every experience is like yours. And that’s OK. Be patient. Give the benefit of the doubt. Sometimes my face feels droopy and lopsided Listen when people tell you their stories, even though you may have never experienced what they’re describing. Bodies, like people, are diverse and we need to make space for each other as we move through the world. Because we are better together. and sometimes I’m perfectly fine and strong and happy. Every day is a surprise.

Community Voices

Thanks to IVIG, I can fully enjoy life again

Last month I shared a post on my blog’s www.facebook.com/thebattlewithinfight about my IVIG treatments that was viewed by 5529 people, had 2394 engagements, 30 shares, and over 70 reactions. This was despite the fact my blog Facebook page only has just under 200 followers. It was the single most responded to post I’ve ever made, which tells me people on IVIG want a way to tell their loved ones what they are going through. I’ve had many questions of “What IS IVIG anyway?” So, as I prepare to start my 12th month of IVIG treatments, I’m going to share all that I’ve learned in the past year about this amazing, even miraculous for some, and very expensive (on average $8,000 per day) treatment. I’m not a doctor or a scientist. I’m just a #RareDisease patient that finally relented to adding this treatment to my arsenal to keep my rare disease, www.mda.org/disease/lambert-eaton-myasthenic-syndrome at bay after a year of gentle prodding by my neurologist to start IVIG.

Why did it take a year for me to relent to addingwww.aaaai.org/conditions-and-treatments/library/immune-defic... to my treatment plan? Besides the fact that I knew I would have to spend time a good chunk of time, on a regular basis, having this treatment infused into my body, the side effect profile is SCARY. IVIG message boards are filled with stories of extremely painful aseptic #Meningitis requiring hospital stays. People who suffer from chronic migraines, like me, are especially prone to this debilitating and very painful side effect.

Warnings and precautions listed on inserts include:

Hypersensitivity (causing anaphylactic reactions)

Renal Dysfunction causing acute Renal Failure, Thrombosis

Hyperproteinemia, increased Serum Viscosity and hyponatremia

Aseptic Meningitis Syndrome

Hemolysis

Hypertension

Transfusion Related Acute Lung Injury

Volume Overload

Transmission Infectious Agents

In more simple words, all kinds of painful things that could possibly “cause morbidity” are risk factors of the treatment needed to keep the disease a doctor has prescribed IVIG for at bay. Other than LEMS, there are many other diseases that IVIG is prescribed for. Some people whose bodies do not have enough antibodies on their own are given IVIG so that they gain antibodies and can fight off infections. For those whose antibodies are on the rampage attacking their own cells as is the case with many autoimmune diseases, IVIG is used at much higher doses to stop the patient’s own antibodies from attacking. The dosing for autoimmune patients is much higher than those who need to have their immune system supplemented, which can lead to much worse side effects.

Side effects usually include: headaches, fatigue, nausea, fever, flu-ish feelings.

For me, my rare autoimmune disease, LEMS, was progressing despite the original symptoms being successfully treated. My autonomic system was being affected. I was finding it difficult to swallow food, my meds, and even sometimes the process of swallowing my water to take my meds took more effort than one could ever imagine it taking. Then, at about the same time, my voice started losing inflection. The muscle groups for swallowing are right near the muscle groups for the voice box. A different, more straightforward neurologist in my neurologist’s group looked me straight in the eye when I told her I didn’t want to risk the side effect profile of IVIG and said: “Dawn if you don’t start doing something to modulate your immune system, your disease is just going to progress.” That was the only conversation I needed to realize that the path of progression would then lead to the muscles of my diaphragm. When those muscles become involved in any myasthenic disease, that is when things get deadly serious. As we say in Maine, it was a “no brainah!” I agreed to get started with IVIG.

IVIG, in the most simple of terms, is human immunoglobulin G, given intravenously. This product is made from www.webmd.com/a-to-z-guides/qa/what-is-intravenous-immunoglo... of a combined 10,000-15,000 plasma donors. (THANK YOU, donors!) Prior to being separated for its different parts, the plasma from donors is tested for infections and purified. Due to this being a blood product, the infusion is a thicker solution than most IVs. Because of this, and to help lower the risk of side effects, the infusion rates for IVIG products is very slow. For example, an infusion of about 30 g in 300 mls will take many hours. Most infusions are broken down over a series of many hours, over numerous days in a row. This can be problematic with small veins and even the most hearty veins will become sore and sometimes blow out. Some people end up having a port placed to ease the issue of venous access for their infusions. Others change to a subcutaneous route of administering the treatment. However, for those needing the highest doses of IgG, www.webmd.com/drugs/2/drug-94950/immune-globulin-human-igg-s... can sometimes be a difficult route to gain the most benefit.How does IVIG work? Literally, there seems to be no absolutely known mechanism of action. Words such as “probable” and “likely” are used more in the description of the mechanism of action with this treatment than any other that I have everen.wikipedia.org/wiki/Immunoglobulin_therapy. I choose to look at it the way my neurologist described it for me (after telling me that the mechanism is really not known). By my body being flooded with immunoglobulin G from 10-15k donors, my antibodies don’t have a chance. They are outnumbered and die. The shock to my system feels a million times stronger than the shock of having a flu shot. I get chills, my chest often times is uncomfortable, my stomach hurts, I’ve had #Headache pain that is comparable to spinal #Migraine pain, nausea, chills, alternating with sweats, and am exhausted. I’ve learned to keep lots of fluids with electrolytes handy, and coffee at the ready (to ease the headaches when nothing else will help, even at 2 am). Easy foods are on hand. I rotate between my bed and my recliner as keeping my head elevated helps with the head pain. And, due to the shock to my body, as much as I feel “lazy” I know I can’t put stress on my body and must not push it…no exercising, moving furniture, cleaning. I just have to “be” and let the treatment do its job. I prepare for downtime before my treatment and then let it go and just rest.However, once the side effects drop off, it’s like the rainbow after a storm. I suddenly have more energy than I’ve had in decades. The closet that needs to be cleaned out? Done. Painting the room that I’ve wanted to paint since moving into my home three years ago but could never find the energy to do? Looks great! Take a road trip to anywhere on the back of a friend’s Harley for the day? Let’s go! Go to California for a 4-day Global Genes Rare Disease Summit with jet lag, lots of friends, meetings, parties, and not sleeping in my own bed? SIGN ME UP! Not only have I been able to do all of the above since starting my IVIG treatments this past year; but I’ve been able to do them with a smile and without having relapses needing days of recovery. Sure, I’ve needed to rest. However, upon return from that trip from California, I was able to help rescue my neighbor’s new escaped rescue pup that had evaded the entire neighborhood for days. I was literally with my belly on the ground, utilizing the tricks I learned from “Pit Bulls and Paroles” in order to capture the little wild scared red pup. Prior to IVIG, I would not have been able to have moved, let alone do what needed to be done to capture the pup upon returning from 6 days in California with jet lag

.

Case in point, About 10 months prior to starting IVIG, I had visited two of my adult sons in Maryland for 4 days. When I returned home from that visit, my LEMS flared with insane numbness and weakness for well over a week. It took close to two to get back to my “normal.” When I complained to my neurologist and my PCP about it they both reminded me that between my LEMS and another autoimmune diagnosis, my body was going to need time to recover from doing things out of the ordinary. The enjoyment of visiting my adult sons was followed by a huge amount of frustration with my own body reacting that way it did for so darn long after. The IVIG has lessened that recovery time to maybe needing a longer nap than usual the day after returning from one of my trips.Does everyone gain the same IVIG? Not necessarily. Everyone is different. Some can see an immediate benefit. Some it takes months of treatment. Some find after months of treatment that it, unfortunately, isn’t working for them. There are different brands of IVIG with different formulations, which patients all react to differently. IVIG patients have to find the right brand of IVIG for their bodies as each brand has differing amounts of IgA, sodium, sugar, PH levels, etc. Sometimes infusion centers or specialty pharmacies that set up home delivery for patients who do home infusions have preferred brands. Sometimes it’s insurance that dictates. I even had one situation where the pharmacy alternated brands each day of my three-day treatment (not good!). Each patient’s doctor is as different as well when it comes to being pro-active in doing everything possible to help lessen the chance or severity of side effects. I’m thankful mine orders IV saline for before and after my infusion, as well as Tylenol, Benedryl and Zofran to keep nausea at bay. Some even get IV steroids as a part of their treatment to help alleviate the migraines. I choose to forego the steroids with the fact that weight fluctuates around 10 lbs with each treatment as it is.IVIG’s half life is 3 weeks, which means the down-slide back to their pre-infusion normal usually starts about then. Schedules differ for everyone. Some need it every week, every two weeks, every three, every four, or more. However, no matter what the schedule, patients need to be on top of it all, during a time when they are feeling at their worst, just prior to infusions. Did premeds get ordered to help lessen side effects? How much fluid should I drink in the days leading up to treatment? (Answer, you can never drink enough!) Do I have everything I need to get through a number of days after not feeling well? Most patients who are on IVIG look like they have absolutely nothing wrong with them when they go to and from the infusion center. We usually look pretty tired on the subsequent days but the reality is, most of us are dealing with invisible illnesses so we go about getting our treatments looking as if we are just tired from a long days’ work. There are no telltale signs of what we are dealing with. So, if you know someone on IVIG, and you have extra energy or time, reaching out with a special treat be it a cup of coffee, a home cooked meal, or even just a text message that you are thinking of them will make all the difference in the world. If your IVIG loved one has young children, offer to take the kids to the movies, or out of the house for a while to use up their energy. As tough a road as recovering from IVIG treatment has been for me at times, I listen to my IVIG online friends with young children and honestly can’t imagine how they do it. Some have mentioned considering NOT doing IVIG because they can’t manage it with their young children. This is simply not okay.It takes a village to get through the challenges of life; but when the village doesn’t realize what’s going on and how they can help, the village keeps busy with other, more visible things. I certainly hope that your village becomes more aware after reading this post and helps you out with your life-sustaining IVIG journey.

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Dawn DeBois

Intravenous Immunoglobulin IVIG Shortage: Ways to Advocate

Patients across the United States receive regular phone calls about their intravenous immunoglobulin (IVIG) treatments. Typically, these calls are to confirm scheduled treatments. However, in recent weeks, the calls are causing distress by relaying messages such as the following: “Due to the nationwide IVIG shortage, we need to cancel your appointment.” This shortage has understandably caused panic among patients who depend on IVIG to walk, talk, breathe and live. Christina Caron, a friend with chronic inflammatory demyelinating polyneuropathy (CIDP) living in Maine, has been on IVIG treatment for 19 years. She, like thousands of other IVIG patients, has taken to social media to ask for plasma donations to help alleviate the shortage. She said that for her, “IVIG treatments literally mean the difference between being able to function and paralysis.” I am one of many patients who has received a call to tell me that my IVIG treatment has been delayed due to the national shortage. For over a year, my IVIG treatments have been an integral part of my trifecta of medications that have managed my Lambert-Eaton myasthenic syndrome (LEMS) symptoms. I recently shared the benefits that I’ve experienced on IVIG in a blog titled, “Thanks to IVIG, I can fully enjoy life again.” Every patient who is experiencing delays or has been denied treatment is asking themselves, “How quickly will my symptoms escalate?” CIDP and LEMS patients are not the only ones treated with IVIG. The miracle therapy referred to as “liquid gold” is indicated as a successful treatment in the areas of neurology, hematology, immunology and rheumatology, and for diseases such as primary antibody deficiency, myasthenia gravis and lupus. IVIG gives some of us periods in which we are almost symptom-free, as if we were before our lives were turned upside down by our illnesses. IVIG keeps many people alive and has saved many lives. I contacted a spokeswoman from Takeda Pharmaceuticals, one of the companies that manufacturers IVIG products, to gain an understanding of the reasons for the IVIG shortage. She explained: “Over the past 15 years we have seen demand for immunoglobulins (Ig) steadily increase, and more recently demand for Takeda’s Ig portfolio, including GAMMAGARD LIQUID [Immune Globulin Infusion (Human)] 10% Solution, outgrew the market.” As a result of the manufacturing time required to produce GAMMAGARD LIQUID combined with growing demand, we are experiencing interruptions of GAMMAGARD LIQUID that will likely persist throughout 2019.” She added, “We recognize the seriousness of this situation and are working diligently toward addressing this interruption of GAMMAGARD LIQUID.” The American Society of Health-System Pharmacists has an inclusive list of the current immunoglobulin shortages that affect multiple brands and are due to increased demand. As someone with an autoimmune disease, the demand for IVIG is unsurprising to me because the treatment works so well at stopping attacks by rogue antibodies, allowing patients to enjoy life without the fear of being around sick people. IVIG enables me to live fully and happily despite having LEMS. Friends who hadn’t seen me since starting IVIG can’t believe how well I’m doing. Many have said they haven’t ever seen me look or sound as well as I do now. IVIG is genuinely life-changing for me and thousands of others. So, if you’re facing an IVIG shortage, here’s my my patient-to-patient recommendation: Stay in continual communication with your prescribing provider. Let them know when your symptoms start to escalate. You might need to discuss other treatment options with their providers, which may include plasmapheresis or immunosuppressant medications. Remember, processing of blood products takes time, so this shortage will not be solved overnight. I know I am one of the fortunate ones. Luckily, I recently received a call from my infusion center to confirm my rescheduled IVIG infusions the following week. I am relieved because my LEMS symptoms are flaring: My legs are heavy, my vision is worsening, and getting up from my trusty recliner takes both hands. I need to hold on to the wall to ascend the one stair in my house, and my exhaustion has returned to my pre-diagnosis levels. However, though I am receiving treatment soon, the shortage means other scheduled treatments are not guaranteed. I am looking at all available options to manage my illness during this uncertain time. If there is a rainbow after the storm of this nationwide IVIG shortage, it will be that not a single droplet of blood product will be received without gratitude for the miracle of the entire IVIG process, from donor to patient. Are you facing access issues with your IVIG treatment? Let us know in the comments below.

Community Voices

What’s IVIG all about anyway? #IVIG

<p>What’s IVIG all about anyway? <a class="tm-topic-link ugc-topic" title="IVIG" href="/topic/ivig/" data-id="5b23ce8e00553f33fe995465" data-name="IVIG" aria-label="hashtag IVIG">#IVIG</a> </p>
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The Reality of My Life With Myasthenia Gravis

Before I was officially diagnosed with myasthenia gravis but experiencing some of the symptoms that characterize this disease, I expressed my concern for my health to a few people, as I knew something was just “off.” The responses varied, but for years, I struggled to get people to believe what I was going through. Unbeknownst to me, convincing individuals of my lived experience at this time was only the beginning of a long road ahead, paved with discrimination, stereotyping and judgment. The official diagnosis provided validation, however, to some people, “myasthenia gravis” was just words on a piece of paper. For me, it was my everyday life and still is. Living with an invisible illness means constantly having to prove your truth to others. It can be utterly exhausting, always defending something you know and feel with such certainty. Some of you may be wondering, “Why do you feel like you have to do this? Why do you care what others think? Why is it so important to get others to understand this part of your life?” Promoting this understanding is crucial to my daily living. I need others to realize the impact this illness has in all the different areas of my life in order to be an accepted friend, family member, colleague and contributing member of society. More importantly, this illness is larger than my own experience, larger than a medical diagnosis, and more than just weakness within the muscles of my body. Illness can mean losing friends and people you care about because they think you’re lying or lazy, or they’re tired of you canceling plans on them last minute. Illness can mean sacrificing incredible job opportunities you are passionate about because you have had too many employers that are unwilling or unable to accommodate you in the workplace. Illness can mean revealing the most vulnerable thing about you to professors and administrators because you need adaptations in and outside of the classroom in order to be a successful student. Illness can mean having to utilize the elevator or a disabled parking spot and people patronizing you because they cannot see what’s happening within your body. Illness can mean electing to forego social events because you fear you won’t be able to keep up with others, or you cannot afford to spend energy on something that sometimes seems frivolous in comparison to work, school and your health. Illness can mean postponing the start of a family as taking care of your health is hard enough, let alone taking care of children that depend on you. Illness can mean prioritizing activities of daily living, knowing your to-do list will never be completed. Illness can mean people questioning and challenging the existence and severity of your illness when they have no business doing so. Illness can mean a life of encounters filled with shame, guilt, pain, loss, scrutiny, accusation and misunderstanding. And when such encounters occur, we are left feeling unworthy when all we want is a life filled with freedom, choice, joy, success, acceptance, dignity and love. What hurts the most is meeting people who believe they have the authority to have an opinion about my lived experience. It is the off-handed comments that reiterate my frustration with the societal understanding of illness and disability, such as: “Well at least it’s not cancer,” “you don’t look sick,” “you’re too young to be tired,” or, “myasthenia gravis is actually relatively manageable and people can live pretty normal lives with this diagnosis.” On some level I can appreciate the hint of empathy weaved within these statements. However, in all honesty, I feel like I am getting gut-punched every time I hear such sentiments. What is the intention behind these statements? Why is there a need to compare or rate illnesses and stack them up against each other? Why is there a need to make light of so many people’s situations? Is it to make patients feel like “things could be worse?” Or are those making these comments trying to mitigate an uncomfortable topic, as illness can sometimes be taboo to discuss? Why do others feel the need to appraise the reality of my illness when they have absolutely no idea what it feels like to live with my MG? Being criticized and ridiculed by my own community, other chronically ill people, was the last straw for me. I recently participated in a social media opportunity that allowed me to share my experience living with myasthenia gravis. As I always do, I made note that my experience is solely my own, and I only reveal my story in the hope people can feel comforted, cared for and not alone. For the most part, people embraced my vulnerability and appreciated my willingness to share my story and promote awareness for this disease. But there were a select few who felt the need to belittle me and depreciate my journey with MG. I was shocked, but I took the opportunity as a learning experience. Not everyone is going to like me, understand me or agree with me. I’m OK with that, however I do not accept the unwarranted denial of my chronic illness by others. This is why I care. This is why I am committed to advocating for a world with a little bit more respect, tolerance and equality. I’m not naïve. I know people are allowed to have an opinion, but my life with chronic illness isn’t here to satisfy your expectations. We all have our own paths in life. Our routes may look different, but we are all trying to get to the same destination. Whichever course in life you decide, choose one that propels others forward, not one that sets others back.

Dawn DeBois

Intravenous Immunoglobulin IVIG Shortage: Ways to Advocate

Patients across the United States receive regular phone calls about their intravenous immunoglobulin (IVIG) treatments. Typically, these calls are to confirm scheduled treatments. However, in recent weeks, the calls are causing distress by relaying messages such as the following: “Due to the nationwide IVIG shortage, we need to cancel your appointment.” This shortage has understandably caused panic among patients who depend on IVIG to walk, talk, breathe and live. Christina Caron, a friend with chronic inflammatory demyelinating polyneuropathy (CIDP) living in Maine, has been on IVIG treatment for 19 years. She, like thousands of other IVIG patients, has taken to social media to ask for plasma donations to help alleviate the shortage. She said that for her, “IVIG treatments literally mean the difference between being able to function and paralysis.” I am one of many patients who has received a call to tell me that my IVIG treatment has been delayed due to the national shortage. For over a year, my IVIG treatments have been an integral part of my trifecta of medications that have managed my Lambert-Eaton myasthenic syndrome (LEMS) symptoms. I recently shared the benefits that I’ve experienced on IVIG in a blog titled, “Thanks to IVIG, I can fully enjoy life again.” Every patient who is experiencing delays or has been denied treatment is asking themselves, “How quickly will my symptoms escalate?” CIDP and LEMS patients are not the only ones treated with IVIG. The miracle therapy referred to as “liquid gold” is indicated as a successful treatment in the areas of neurology, hematology, immunology and rheumatology, and for diseases such as primary antibody deficiency, myasthenia gravis and lupus. IVIG gives some of us periods in which we are almost symptom-free, as if we were before our lives were turned upside down by our illnesses. IVIG keeps many people alive and has saved many lives. I contacted a spokeswoman from Takeda Pharmaceuticals, one of the companies that manufacturers IVIG products, to gain an understanding of the reasons for the IVIG shortage. She explained: “Over the past 15 years we have seen demand for immunoglobulins (Ig) steadily increase, and more recently demand for Takeda’s Ig portfolio, including GAMMAGARD LIQUID [Immune Globulin Infusion (Human)] 10% Solution, outgrew the market.” As a result of the manufacturing time required to produce GAMMAGARD LIQUID combined with growing demand, we are experiencing interruptions of GAMMAGARD LIQUID that will likely persist throughout 2019.” She added, “We recognize the seriousness of this situation and are working diligently toward addressing this interruption of GAMMAGARD LIQUID.” The American Society of Health-System Pharmacists has an inclusive list of the current immunoglobulin shortages that affect multiple brands and are due to increased demand. As someone with an autoimmune disease, the demand for IVIG is unsurprising to me because the treatment works so well at stopping attacks by rogue antibodies, allowing patients to enjoy life without the fear of being around sick people. IVIG enables me to live fully and happily despite having LEMS. Friends who hadn’t seen me since starting IVIG can’t believe how well I’m doing. Many have said they haven’t ever seen me look or sound as well as I do now. IVIG is genuinely life-changing for me and thousands of others. So, if you’re facing an IVIG shortage, here’s my my patient-to-patient recommendation: Stay in continual communication with your prescribing provider. Let them know when your symptoms start to escalate. You might need to discuss other treatment options with their providers, which may include plasmapheresis or immunosuppressant medications. Remember, processing of blood products takes time, so this shortage will not be solved overnight. I know I am one of the fortunate ones. Luckily, I recently received a call from my infusion center to confirm my rescheduled IVIG infusions the following week. I am relieved because my LEMS symptoms are flaring: My legs are heavy, my vision is worsening, and getting up from my trusty recliner takes both hands. I need to hold on to the wall to ascend the one stair in my house, and my exhaustion has returned to my pre-diagnosis levels. However, though I am receiving treatment soon, the shortage means other scheduled treatments are not guaranteed. I am looking at all available options to manage my illness during this uncertain time. If there is a rainbow after the storm of this nationwide IVIG shortage, it will be that not a single droplet of blood product will be received without gratitude for the miracle of the entire IVIG process, from donor to patient. Are you facing access issues with your IVIG treatment? Let us know in the comments below.

Dawn DeBois

Intravenous Immunoglobulin IVIG Shortage: Ways to Advocate

Patients across the United States receive regular phone calls about their intravenous immunoglobulin (IVIG) treatments. Typically, these calls are to confirm scheduled treatments. However, in recent weeks, the calls are causing distress by relaying messages such as the following: “Due to the nationwide IVIG shortage, we need to cancel your appointment.” This shortage has understandably caused panic among patients who depend on IVIG to walk, talk, breathe and live. Christina Caron, a friend with chronic inflammatory demyelinating polyneuropathy (CIDP) living in Maine, has been on IVIG treatment for 19 years. She, like thousands of other IVIG patients, has taken to social media to ask for plasma donations to help alleviate the shortage. She said that for her, “IVIG treatments literally mean the difference between being able to function and paralysis.” I am one of many patients who has received a call to tell me that my IVIG treatment has been delayed due to the national shortage. For over a year, my IVIG treatments have been an integral part of my trifecta of medications that have managed my Lambert-Eaton myasthenic syndrome (LEMS) symptoms. I recently shared the benefits that I’ve experienced on IVIG in a blog titled, “Thanks to IVIG, I can fully enjoy life again.” Every patient who is experiencing delays or has been denied treatment is asking themselves, “How quickly will my symptoms escalate?” CIDP and LEMS patients are not the only ones treated with IVIG. The miracle therapy referred to as “liquid gold” is indicated as a successful treatment in the areas of neurology, hematology, immunology and rheumatology, and for diseases such as primary antibody deficiency, myasthenia gravis and lupus. IVIG gives some of us periods in which we are almost symptom-free, as if we were before our lives were turned upside down by our illnesses. IVIG keeps many people alive and has saved many lives. I contacted a spokeswoman from Takeda Pharmaceuticals, one of the companies that manufacturers IVIG products, to gain an understanding of the reasons for the IVIG shortage. She explained: “Over the past 15 years we have seen demand for immunoglobulins (Ig) steadily increase, and more recently demand for Takeda’s Ig portfolio, including GAMMAGARD LIQUID [Immune Globulin Infusion (Human)] 10% Solution, outgrew the market.” As a result of the manufacturing time required to produce GAMMAGARD LIQUID combined with growing demand, we are experiencing interruptions of GAMMAGARD LIQUID that will likely persist throughout 2019.” She added, “We recognize the seriousness of this situation and are working diligently toward addressing this interruption of GAMMAGARD LIQUID.” The American Society of Health-System Pharmacists has an inclusive list of the current immunoglobulin shortages that affect multiple brands and are due to increased demand. As someone with an autoimmune disease, the demand for IVIG is unsurprising to me because the treatment works so well at stopping attacks by rogue antibodies, allowing patients to enjoy life without the fear of being around sick people. IVIG enables me to live fully and happily despite having LEMS. Friends who hadn’t seen me since starting IVIG can’t believe how well I’m doing. Many have said they haven’t ever seen me look or sound as well as I do now. IVIG is genuinely life-changing for me and thousands of others. So, if you’re facing an IVIG shortage, here’s my my patient-to-patient recommendation: Stay in continual communication with your prescribing provider. Let them know when your symptoms start to escalate. You might need to discuss other treatment options with their providers, which may include plasmapheresis or immunosuppressant medications. Remember, processing of blood products takes time, so this shortage will not be solved overnight. I know I am one of the fortunate ones. Luckily, I recently received a call from my infusion center to confirm my rescheduled IVIG infusions the following week. I am relieved because my LEMS symptoms are flaring: My legs are heavy, my vision is worsening, and getting up from my trusty recliner takes both hands. I need to hold on to the wall to ascend the one stair in my house, and my exhaustion has returned to my pre-diagnosis levels. However, though I am receiving treatment soon, the shortage means other scheduled treatments are not guaranteed. I am looking at all available options to manage my illness during this uncertain time. If there is a rainbow after the storm of this nationwide IVIG shortage, it will be that not a single droplet of blood product will be received without gratitude for the miracle of the entire IVIG process, from donor to patient. Are you facing access issues with your IVIG treatment? Let us know in the comments below.

Dawn DeBois

Intravenous Immunoglobulin IVIG Shortage: Ways to Advocate

Patients across the United States receive regular phone calls about their intravenous immunoglobulin (IVIG) treatments. Typically, these calls are to confirm scheduled treatments. However, in recent weeks, the calls are causing distress by relaying messages such as the following: “Due to the nationwide IVIG shortage, we need to cancel your appointment.” This shortage has understandably caused panic among patients who depend on IVIG to walk, talk, breathe and live. Christina Caron, a friend with chronic inflammatory demyelinating polyneuropathy (CIDP) living in Maine, has been on IVIG treatment for 19 years. She, like thousands of other IVIG patients, has taken to social media to ask for plasma donations to help alleviate the shortage. She said that for her, “IVIG treatments literally mean the difference between being able to function and paralysis.” I am one of many patients who has received a call to tell me that my IVIG treatment has been delayed due to the national shortage. For over a year, my IVIG treatments have been an integral part of my trifecta of medications that have managed my Lambert-Eaton myasthenic syndrome (LEMS) symptoms. I recently shared the benefits that I’ve experienced on IVIG in a blog titled, “Thanks to IVIG, I can fully enjoy life again.” Every patient who is experiencing delays or has been denied treatment is asking themselves, “How quickly will my symptoms escalate?” CIDP and LEMS patients are not the only ones treated with IVIG. The miracle therapy referred to as “liquid gold” is indicated as a successful treatment in the areas of neurology, hematology, immunology and rheumatology, and for diseases such as primary antibody deficiency, myasthenia gravis and lupus. IVIG gives some of us periods in which we are almost symptom-free, as if we were before our lives were turned upside down by our illnesses. IVIG keeps many people alive and has saved many lives. I contacted a spokeswoman from Takeda Pharmaceuticals, one of the companies that manufacturers IVIG products, to gain an understanding of the reasons for the IVIG shortage. She explained: “Over the past 15 years we have seen demand for immunoglobulins (Ig) steadily increase, and more recently demand for Takeda’s Ig portfolio, including GAMMAGARD LIQUID [Immune Globulin Infusion (Human)] 10% Solution, outgrew the market.” As a result of the manufacturing time required to produce GAMMAGARD LIQUID combined with growing demand, we are experiencing interruptions of GAMMAGARD LIQUID that will likely persist throughout 2019.” She added, “We recognize the seriousness of this situation and are working diligently toward addressing this interruption of GAMMAGARD LIQUID.” The American Society of Health-System Pharmacists has an inclusive list of the current immunoglobulin shortages that affect multiple brands and are due to increased demand. As someone with an autoimmune disease, the demand for IVIG is unsurprising to me because the treatment works so well at stopping attacks by rogue antibodies, allowing patients to enjoy life without the fear of being around sick people. IVIG enables me to live fully and happily despite having LEMS. Friends who hadn’t seen me since starting IVIG can’t believe how well I’m doing. Many have said they haven’t ever seen me look or sound as well as I do now. IVIG is genuinely life-changing for me and thousands of others. So, if you’re facing an IVIG shortage, here’s my my patient-to-patient recommendation: Stay in continual communication with your prescribing provider. Let them know when your symptoms start to escalate. You might need to discuss other treatment options with their providers, which may include plasmapheresis or immunosuppressant medications. Remember, processing of blood products takes time, so this shortage will not be solved overnight. I know I am one of the fortunate ones. Luckily, I recently received a call from my infusion center to confirm my rescheduled IVIG infusions the following week. I am relieved because my LEMS symptoms are flaring: My legs are heavy, my vision is worsening, and getting up from my trusty recliner takes both hands. I need to hold on to the wall to ascend the one stair in my house, and my exhaustion has returned to my pre-diagnosis levels. However, though I am receiving treatment soon, the shortage means other scheduled treatments are not guaranteed. I am looking at all available options to manage my illness during this uncertain time. If there is a rainbow after the storm of this nationwide IVIG shortage, it will be that not a single droplet of blood product will be received without gratitude for the miracle of the entire IVIG process, from donor to patient. Are you facing access issues with your IVIG treatment? Let us know in the comments below.