Egregious medical reporting and poor medical study leads to misleading headlines and faulty scientific conclusions in newest robotic thymectomy study for MG.

As with many things, time and experience allows for a better understanding of more complex entities, chief among them are medical studies with a language all their own. Over the years, I’ve learned that not even medical studies are immune to poor scientific construction, physician bias, poor education and assumptions. Increasingly, these studies offer poor comparative data and incomplete, equitable analysis. This, alongside attractive and misleading headlines within medical news reporting, makes for a rapid spread of information online without healthy accountability. 

This makes me very mad as both patient and advocate, because the information is many times a segway to crucial decision making for patients facing difficult medical situations and attempting to weigh the outcomes of these decisions.

Thymectomy for a long term treatment with MG has long been considered controversial with physicians and riddled with inadequate studies and poor data. This leaves the patients with a lot of questions and too few good answers.

The latest issue that reflects ongoing medical reporting buffoonery involves comparing newer thymectomy techniques and comes with a catchy headline “Complete MG Remission Seen as More Likely in Robot-assisted Thymectomy”. 

Sounds like amazing news! Until you actually read the study and summation. 

1.) The author takes the time to discuss in a rather disparaging way, the longest standing thymectomy surgical technique and also the most controversial, trans-sternal thymectomy where they access the patient through the sternum bone. It sounds scary and as a post trans-sternal patient myself, I can tell you it is no simple thing! But I can also tell you that this approach has it’s strong benefits both during surgery and in the long term that is often ignored or skewed in reporting. The author here focuses on the negative potentials of trans-sternal without balancing it out with the positives and doesn’t offer comparative analysis for surgical visualization, doesn’t detail the inherent risks that lower visibility can bring with the newer approaches, doesn’t offer information about how complex Thymectomy really is and how this original method allows for the best field of vision for the surgeon – good news for the patient should their thymus have complex features or entanglements inside that they couldn’t predict – and they didn’t take the time to offer numbers to compare relapse and remission rates so that the reader could understand what the risks are long term in light of the new study.

The focus was decidedly negative and wholly incomplete. There was no reason or value for the author to bring this surgical approach up as it is not analyzed or referenced in the actual study, offering bias and lazy comparisons for an article attempting to help the reader understand more about Thymectomy.

2.) The author then spends the rest of the time discussing two other surgical procedures that were actually studied and compared by researchers, hi lighting the rate of blood loss and hospital stay comparisons, this time offering general but very limited data. 

Never again does the author compare the trans-sternal, in spite of it’s multitude of studies and history of being used for more than 5 decades in MG. This makes the title article decidedly false, mostly by omission but also through inference of fully exhaustive comparisons. The inference that robotics offers the best remission outcomes without stating something like: when compared to VATS Thymectomy, it allows ambiguity and omission to lead to a conclusion that is hyped and murky.
The author never bothers to correct this even in their conclusion in spite of apparent awareness early on that other methods are used and influence patient choice and clinical outcomes. I take great issue with this type of journalism, especially with medical news.

3.) The author goes on to define “complete remission” as being symptom free for at least a year and off mestinon (pyridostigmine bromide). This is not accurate. Complete remission is a patient with no symptoms for at least one year and off all medication. Otherwise, the patient would be considered stable and under pharmaceutical remission, a very different animal. 

4.) The author then briefly acknowledges the researcher’s admission of poor comparative data between the VATS and RATS procedure. “Another potential source of bias, they added, might stem from the unequal follow-up period between the two groups. Those who had RATS were followed for a median of 5 years, whereas those who had VATS were monitored for a median of 12 years, allowing for an increased possibility of relapse.” 

That’s a huge difference!!! And it matters incredibly so when you are talking about remission and relapse! The researchers have no idea what occurs past the median time of 5 years as it relates to remission or relapse with robotics, yet both the author and the researchers feel comfortable still make so grand a conclusion!

The researchers persist that “RATS allows for greater precision and more successful removal of the thymus than does VATS.” 

Robotic surgical approaches are rapidly gaining popularity being touted as safer and offering better outcomes like we see here. Robotic thymectomy (RATS) is one of the studied approaches in this newest long term study.

Precision due to delicate and refined tools of a machine instead of a human hand, does not always equate to a better or more successful choice, even though precise cutting is likely increased with this technique, it doesn’t account for field of visualization or any complicating factor that they cannot predict beforehand including enlarged thymus glands, horns on the gland, a gland that is pressing on or wrapped around phrenic nerves (what allows us to breathe), the heart, lungs and so much more.

Additionally, this comparison is unequivocal and it’s scientific premise is faulty. By what standard are they defining more successful? Their success is studied only in short term with multiple other conditions for success. They focus mostly on remission based on their shorter post operative observations but fail to gather data on long term relapse rates, a strong key in assessing true success. Relapse rates should be studied and compared to in equal measure of remission rates and length of follow up.

If RATS has a fairly equitable or advantageous outcome at the 5 year mark but is found to have a higher relapse rate at the 10 or 12 year mark compared to VATS or trans-sternal, that makes it a less successful approach and a risk a patient should be made fully aware of when making their surgical choices. 

Relapse is just as important, if not more critical an analysis to be made when considering thymectomy choices than initial remission rates in early follow ups. A patient may wish to choose a surgical approach that has less initial pain and less time in the hospital, because that sounds great and honestly, who wouldn’t? But if that patient knew their chances for remission were extremely restricted to dependency on age and previous remission and/or might have a stronger chance of the disease coming back, the short term look of less pain might not look as appealing.

Additionally, it is not detailed the populace studied, which would give a better understanding of other cofactors that may also be involved besides age of onset and subsequent date of surgery after onset. For example, all the same subtype of patients (achr positive or seronegative), patients with similar treatment regimens i.e., controlled on mestinon and steroids, similar age groups, disease onset etc… Not only would this be considered a better scientific foundation to build upon, it also gives context to what is being studied and if the success or failure is truly due to the proposed solution. Without this information, we are left to wonder if other factors besides technique had influence in the outcomes.

Their acknowledgement that “patients who were younger, and/or had entered into remission before surgery, had higher chances of  a complete remission at follow-up” is concerning. Younger is not well defined here and significantly limits the available population as the average onset for women is their 2nd and 3rd decade of life and the 4th and 5th decade for men. Previous disease remission is also an odd cofactor to have in the mix to make a contingency in success rates. It would mean these patients are more likely to have had sporadic, short term remissions on their own, apart from surgery, muddying the waters as to the true source of success in these thymectomy cases.

The researchers also fail to note that age and surgery within a certain time limitation of disease onset is true and well studied with trans-sternal thymectomy as well. This doesn’t seem to change regardless of surgical approach. Age matters in greater chances of success across the board but it doesn’t mean there won’t be success without it as well and is not unique to RATS or VATS Thymectomy.

And I’m decidedly sad that a research team felt that they needed to note skill set also likely lends a hand in better recovery and remission rates. That’s a no brainer, folks. This goes for all surgeries and procedure outcomes. 


To be fair to the reporting author, the study was poorly done when looking at their final data and conclusions, giving an illusion of success that may not be merited and certainly leaves a lot of questions.
However, the onus is still on the reporter for creating hype and overall untrue headlines to draw clicks while also offering sloppy medical reporting and failing to ask important questions in their analysis.

The headline is deeply misleading and frankly, irritating. Patients face major decisions and fear looking at whether or not to move forward with a thymectomy and headlines/articles like these do not help the physicians or patients make the best choices. 

Equally or perhaps more concerning is the study itself. The study relies heavily on drastically shortened follow up times by cutting the long term assessment by more than 50%! How can their conclusion be that it holds an edge in complete remission when their compared follow ups weren’t comparable?!

It also seems to require a young age and previous remission (although they don’t state if it is short term, sporadic remission or pharmaceutical remission) as strong cohorts in favorable remission outcomes! This very much matters when looking at surgical success. Is the surgery successful due to technique and method or because of outside cofactors that influence that outcome? Without a control group, we don’t know the answer to that.

It also fails to be exhaustive since it is only compared to one other surgical type and doesn’t offer a well established control group to possibly compare the same subtype of studied patients who chose no thymectomy. While their intent was and is to study and compare only two surgical types, it leaves the patient without a full picture to understand all of their surgical choices and risks with newly studied comparative data. Researchers and surgeons often cite the reduced recovery time and peri surgical risks as obvious reasons to chose VATS or RATS, but doesn’t ask the question if it is best choice for the long term and this study also fails to ask that question as well. If a patient had a choice to deal with a potentially harder recovery for a short time with a better long term guarantee, that needs to be part of the discussion.

This is not the first time studies have been published and even lauded that were poorly done, failed to analyze crucial cofactors, study and include contextual, critical information and other important clinically important criteria, but it’s publication begs for discerning scrutiny that it seems isn’t readily coming from their peers or from news sites.

Frankly, MG patients deserve better.

Please don’t assume that a surgeon will read this and understand the issues that persist with in it. Have a conversation and ask what they feel is important to consider in these situations and see if what they hold of value is what you do.

Below is the link to the aforementioned study and article so you can check it out for yourself and see if you agree or disagree with my concerns.

Author: Rebekah Dorr
Director of Patient Advocacy: MG Hope Foundation

Offering Hope and Love to Myasthenia Gravis Warriors

“Walking with us doesn’t have to be complicated, it just takes a choice.”

We read the well meant phrase often enough; “let me know if you need anything!” as we stare back through a screen, connected in the most disconnected of ways. But how many times do we find ourselves wishing that the cliched, albeit good intentions of another translated into practical help and support where we need it most, without the awkwardness or shame of having to send a message of S.O.S.? 

Myasthenia Gravis came into my life like a whirlwind, it’s symptoms quickly escalating from severe fatigue to respiratory weakness in a matter or ten days. My family and I  found ourselves in the emergency room four different times within a two week period, so severe and fast moving were my symptoms. The diagnostic process involved two spinal taps just 48 hours apart; the second spinal tap left me paralyzed from the waist down due to several rare complications. I was sent home a week later after being kicked out with a security escort, still paralyzed, after we insisted something was very wrong. 

I spent the next six weeks in a wheelchair at home or confined to a bed due to the paralysis and my increasing weakness. 

Concerned friends, family and neighbors dropped by and brought meals or called to check on us and we heard each time the invitation to call if we needed anything. But we found ourselves unsure how to ask, the needs were so great.  One evening however, a friend of the family dropped by unexpectedly after a long day at work and he had with him a special gift; he had taken the time to build me a ramp so I could get down the step from my front door in the wheelchair. 

After he was done installing it and I got to test out my new gift of freedom, he sat with us and visited. He looked at me and said something I will never forget; “Rebekah, that ramp out there? It is temporary. I made it that way on purpose because I believe that you’re going to walk again. And I want you to hang on to that.” He spoke with the grace and love of a father and I wept at his gift, overcome with emotion. He saw a need we didn’t know how to articulate and he showed up without us ever picking up the phone.

It has been seven years and like he promised, the ramp was needed for just six weeks, but it taught me a crucial lesson that I have never forgotten. We have opportunities in our lives to walk with our fellow human beings throughout many ups and downs. Some of us choose to stick around only for the good moments and others still simply don’t know how to respond to the bad, but those choices of investment change lives. 

Over the years, I have heard countless iterations of the invitation to call or reach out if I need something and while I always appreciate the heart that is behind such an entreaty, I find myself thinking back to the unexpected gift of a ramp and how a friend took the time to quietly walk with me and show up in the middle of the messiness. 

Sit with me during treatments, take me to the doctor, help me weed my flower beds or cut my grass, bring meals and paper plates, come sit and talk with me and forgive my messy home, call me once a week and tell me you’re thinking of me. Yes, it takes time and effort to pour into someone who is hurting, but it isn’t complicated. We just need you to show up, no matter what you are able to offer, because it matters far beyond what you could ever imagine. 

I believe we have to learn how to walk with our fellow human beings in this life; how to listen with patient grace, how to find ways to use whatever talents or resources we have to connect, support and stay the course when things get hard and life overwhelms us. It is easy to offer the entreaty that we are available to someone if the person struggling takes the time to call, but it can be hard for us to take you up on that. We don’t want to burden you or interrupt your life and sometimes, the truth of it all is that we just don’t know what to say, we just need someone to show up and let us know that we still matter. 

You see, it is easy to type something online and walk away when life is business as usual but it is a whole other thing when suddenly you are the one in need of support. After all, we once were like you too. Some come walk with us, let us tell you how we really are, no remedies or advice, no cliched responses; just the patience and grace to hear and affirm the truth of it all.

Walking with us doesn’t have to be complicated, it just takes a choice.

The Life I Knew Changed with Myasthenia Gravis

I am writing this letter on my own behalf. I feel it is necessary although not common yet for patients to be advocates for themselves in these situations. I am an honest person, a wife for ten years, mother of two children eight and ten, college graduate with honors, a loyal employee, and U.S. citizen. I have gone through dramatic changes in the last four years. I was diagnosed with Myasthenia Gravis when I was approximately 23 years old, in spite of this autoimmune neuromuscular disease I finished college while working full time.

Upon graduation I became a surgical/ medical instrument representative for a well know company. This job required me to travel, sometimes a great distance, on an almost daily basis. Prior to September 2014 I had Myasthenia Gravis, with daily symptoms and worked fulltime. At that time, I didn’t realize I was pushing my body too hard, therefore suffering physically and my Myasthenia Gravis (MG) not improving. There were times I couldn’t speak and would have to cancel appointments, I didn’t entertain clients where food was involved as chewing food was difficult at times or I would have to use the restroom multiple times due to rapid transition of the bowels, a side effect for me from the mestinon.

Somedays my body wouldn’t move well or my fingers at all, somedays I would get sick and it would take weeks to recover. I would then have to cancel appointments again. My life as I knew it came to an abrupt halt in September of 2014 when I had an MG crisis and was put on life support in hospital near the town I was living. I was on life support for over two weeks at times not know if I was going to live or die but I fought because of my family. During the month of September 2014 I went to the emergency room as I thought I had a cold or bronchitis. I planned on being back home within four hours per the emergency room protocol. Four days later I remember waking up and not knowing where I was, why I was in that room, why I was hooked up to machines, why I couldn’t move or talk, and so on. I remember waking up the next few days having the same feeling. I was sent to the Intensive Care Unit on life support, had bilateral chest tubes, the Rhino Virus, the Entero68 virus, pneumonia, was given paralytics in the Emergency room which is contraindicated for a myasthenia gravis patient, was given antibiotics that was verbally communicated and documented was a contraindicated medicine for a myasthenia gravis patient, had pneumothorax, and had pneumoperitoneum.

After three weeks on life support and being bed ridden I had to learn to breathe again, which is something we are born doing naturally, so to learn how to do this and accept it emotionally was overwhelming. I also had to learn to swallow, control my pee, poop, talk, sit, stand, walk, exercise, and more. This is just the physical part I had to do in the hospital. The emotional part came later. The ICU doctors and team had to do their part as well to keep me alive, with daily bronchoscopes for eighth days after being extubated. I had chest tubes having to be reinserted after pulling them out too soon. I also had a wound to my lip due to being intubated resulting in permanent scaring. Three years has passed since that incident.

I have gone to multiple physical therapy appointments, counseling appointments, primary care doctor appointments, chiropractic appointments, massages, pulmonologist, neurologists, rheumatologists, dermatologist, and more. I have done 16 doses (four rounds) consisting of one day a week, 4-7 hours each day, for four weeks of Rituximab. Approximately 135-225 doses (forty-five rounds) of intravenous immunoglobulins (IVIG) consisting of 3-5 days, 3-5 hours each day every four weeks. I currently am having a hard time with vein access for the (IVIG). Having to do this treatment plan makes me lethargic, I sometimes have flu like symtpoms, my immune sysytem is lowered, I tend to get infections easier, I am unreliable due to my phsyical pain and emtional truama, I dont know when the Rituximab is always needed therefore making long term commitments is difficult.

The physicaly therapist have done all they can and the pain that I have daily is not something they can address or fix. I have been going to counseling appointments over the last two years. I have come a longway but still have problems with large crowds, germs, being away from home for very long, going anywhere overnight, going to any type of healthcare setting, watching anything hospital related on television, and more. I have tried to volunteer in the community but always tend to only do half or less of what is planned initially due to my current condition. I go through daily emotional trauma from the experience. I currently have anxiety, was diagnosed with PTSD, and insomnia (side effect of prednisone, mestinon, anxiety and PTSD). I have daily physical trauma from the experience. I currently have pain in my neck, thoracic and torso area.

I have numerous scars that hurt with the changing weather. My immune system is extremely low due to a previous thymectomy, being on prednisone, doing regular IVIG treatments and the Rituximab treatments. My body, and emotions are not the same as they were before, the current medical treatments needed for my body keeps me from be reliable and committed to things beyond my control. In my opinion, I came out of that tragedy a totally different person and I believe I will never be the same person. I had counseling, have anxiety attacks and am afraid to travel over two blocks to take the children to school preferring not to even leave our home (my safe place). I can no longer talk comfortably to people and do everything possible to avoid crowds. I try to volunteer when I can but have to cancel a lot. The worst part is I found out the hard way that autoimmune disorders can be passed on to your children. My son was diagnosed last year with colitis. I pray everyday a cure is found for my son and I.  Thank you for listening!

Keri Soto

Patience in the middle of the mess with Myasthenia Gravis

Patience- the capacity to accept or tolerate delay, trouble, or SUFFERING without getting angry or upset.

The natural doesn’t make an ounce of sense. Here’s the deal. Surgery was started, incisions were made, the robot was put in place and then my oxygen levels dropped to dangerous levels so they had to stop surgery. The surgeon thought that maybe there was a blood clot in my lung- which is common after IVIG treatments- took me for x-ray and NOTHING! No explanation. They took me to ICU where it took 3 hours for me to come out of the anesthesia… which resulted in me needing the respirator. 🙊🙊🙊 that was the pits! Panic and discomfort are the words to describe it.

Once I got my bearings I was told the news… no thymectomy. I couldn’t believe it. Everything that had been done to prepare for this surgery- my students not having their teacher, the unpaid leave, the expensive treatments, the pain and discomfort I was feeling- all in vain. How could this be?!

“The capacity to ACCEPT SUFFERING without anger.” I must accept that God knows what is best and for some reason He stopped the surgery. I cannot get wrapped up in the expenses, the delays, the suffering. I’d had very specific prayer requests… for the anesthesia to not make me panic, that I wake up normally from the anesthesia, for my recovery to go well, and for my cure. I didn’t even realize when they gave me the anesthesia, the recovery is going well (my MG hasn’t flared up at all- this is HUGE) the respirator was only for 3 hours Vs days, and my cure is up to Him.

So even though this didn’t go the way we’d hoped we still hold steadfast to our hope in Him.

“But blessed is the one who trusts in the Lord,
whose confidence is in him.
They will be like a tree planted by the water
that sends out its roots by the stream.
It does not fear when heat comes;
its leaves are always green.
It has no worries in a year of drought
and never fails to bear fruit.”
Jeremiah 17:7-8

Author: Linda Nulisch

Huperzine A, Mestinon and Myasthenia Gravis

Huperzine A gets a lot of attention as a natural (and sometimes necessary) alternative to pyridostigmine bromide, especially when there are adverse side effects to the synthetic treatment option. So what is the best choice and how do we begin to navigate the options in front of us?

First of all, let’s define what exactly Huperzine A is. Huperzine A is a dietary supplement that is “derived from the Chinese club moss Huperzia serrata and works as a cholinesterase inhibitor — a type of medication that works by improving the availability of the neurotransmitter acetylcholine”, needed for muscle contraction. (1) By definition, this is a similar mechanism of action found in pyridostigmine, also known by the brand name of Mestinon. Pyridostigmine is also classified as a cholinesterase inhibitor which helps to inhbit “the destruction of acetylcholine by cholinesterase and thereby permits freer transmission of nerve impulses across the neuromuscular junction”. (2)

While Huperzine A has been used for centuries in the Chinese culture to treat everything from “rheumatism and colds, to relax muscles and tendons, and to improve blood circulation”, it gained attention as a potential use in the treatment of Alzheimer’s patients. (3) In recent years however, it has sparked interest in the potential treatment of Myasthenia Gravis as an alternative to pyridostigmine. Many cite adverse side effects and intolerable reactions to the pyridostigmine as a motivator for switching to Huperzine A. Others still prefer a more natural approach to their medication regimen.

It is important to know that Huperzine A has only been clinically studied, and at specific doses, in relation to Alzheimer’s disease. This has no clinical backing in the potential treatment of Myasthenia Gravis in the way of controlled studies. (3)

Let’s dig a little deeper though into how these two treatments break down in our bodies and are used to either our benefit or detriment.

  • Side effects, adverse reactions and cholinergic crisis:
    Within the Myasthenic communities online, you may stumble upon individuals who have made the switch from the synthetic pyridostigmine to the natural Huperzine A, citing they could not tolerate an ambiguously defined set of side effects and/or adverse reactions. This is very important to talk about and unpack as much of the movement in favor for Huperzine A rests right here. Pyridostigmine bromide works by stimulating the parasympathetic nervous system, which inevitably includes an over stimulation of the gastrointestinal tract that can lead to bloating, cramping and diarrhea. (4) For many, these side effects can be harsh and debilitating both inside and outside the home and leave many with social hesitation or anxiety of being too far from the nearest bathroom. Pyridostigmine can also cause some mild muscular twitching and systemic cramping, although these side effects are notably and significantly less than their GI counterparts. (4) Understandably so, this would motivate anyone who experiences such side effects to seek a potentially more gentle alternative that is billed as safer and effective for those who made the switch.
  • But, we need to talk about definitions here. Few have ever clarified if they experienced the above reactions and subsequently classified them as “adverse” or “side effects” or if there is more to the picture than meets the eye. You see, pyridostigmine, when taken in a greater dose than what is needed*, can cause what is called a cholinergic crisis which has the potential to produce adverse effects and potentially life threatening scenarios in it’s most severe form. These effects can come about in rapid sequence (usually they begin 45-60 minutes after ingesting an oral dose) and not all symptoms may present in all individuals. Moderate to severe twitching, miosis, excessive salivation and lacrimation, nausea, vomiting and severe diarrhea, severe GI cramping, difficulty breathing, swallowing and speaking, sweating and flushing are all part of the potential presentation. (4) Since it can mimic in presentation with a Myasthenic crisis (disease induced rather than medication induced), it is not always easy to pick up on, even with a trained eye, and can leave many assuming that it is simply an unpleasant side effect of the drug itself. This lack of clarity between true side effect and cholinergic crisis, even in a more mild to moderate form, leaves the Myasthenic with some of the puzzle pieces missing. *Please note that overdose is not the fault of the patient in that it is rarely intentional. As environmental factors and immune fluctuations occur, the need for pyridostigmine can vary and the lack of adjustment to those influencing factors often are the culprit in producing cholinergic crisis.
  • Huperzine A, as noted above, has the same mechanism of action as does it’s synthetic counterpart, meaning that you have the exact same potential to repeat the side effects and cholinergic crisis risks as you did with pyridostigmine. It may take a much higher dose and the impact may be slightly minimized, but the risks are all still there. The selling point it is safer since it is natural. Again, we need to go back to definitions in order to get a clearer picture of what safer with any treatment really means. As it currently stands, “safer” is a loaded word with ambiguous meaning here. We have already talked about it being in the same class as pyridostigmine and working on the same mechanism which, ergo, offers the same risks. Huperzine A still must be processed by the kidneys and liver, just like the synthetic version and it’s renal toxicity is almost identical. (3,4) But we must also recognize that, as a dietary supplement, it is unregulated and that makes it more difficult to ensure safety, efficacy and viability. There are no studies or trials that offer patients or treating physicians a standard for dosing, peaks and falls like we see in pyridostigmine, further augmenting the potential for cholinergic danger and under dosing.
  • The typical half life of pyridostigmine bromide is 3- 4 hours after renal elimination with an estimated half life of Huperzine A to be an estimated 10-14 hours after renal elimination. (3,5) This astounding difference in half life clearance solidifies a marked difference in safe dosing regimens, further augmenting the concerns over the lack of regulation in ingredients and the absence clinical studies to offer up a clear understanding of integral information (ie., when peak release and half-life begins and ends etc..). This leaves both patient and physician zero dosing standard and narrowly contributes a vague and unchecked approach to treatment.

Lack of access, cost and delayed diagnosis can leave many without alternative options other than to reach for Huperzine A and there are those who firmly believe that Huperzine A helps them control their Myasthenia Gravis with fewer side effects than pyridostigmine. While these scenarios and individuals may find great success with their switch to Huperzine A, it begs discernment and caution in understanding all of the potential pros and cons before moving forward.

Author: Rebekah Dorr
Founder & Administrator, Myasthenia Gravis Unmasked

(1) (

(2) (Miller RD. Pharmacodynamics and pharmacokinetics of anticholinesterase. In: Rueg-heimer E, Zindler M, ed. Anaesthesiology. [Hamburg, Germany: Congress; Sep 14-21,1980; 222-223.] [Int Congr. No. 538], Amsterdam, Netherlands: Excerpta Medica; 1981)

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Help Tyler Get a New Mobility Scooter

Hi, I’m Tyler, the admin of the MG Hope blog. I have MG among many other chronic illnesses and I use a mobility scooter to get around on my college campus.

I’m a part time college student studying for a B.S. in Computer Information Systems & Technology. I started college in 2011 as a full time student before my diagnosis and kept going while trying to get a diagnosis. I am determined to finish and my mobility scooter is my lifeline to get to and from classes and meetings as a student leader. Without a new scooter, I will likely be unable to finish school.

My current scooter needs about $500 – $600 worth of parts and it is 15 years old, bought used. I need a new one as I can’t see putting money into something that may or may not last, but I lack the funds to buy it. My insurance won’t pay for it as I don’t need or use it within my home to complete my “daily living activities.”

I greatly appreciate any help you can provide and I hope you’ll consider sharing this link.

MG Hope Admin

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