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Lisa Klimas

I'm a 35 year old microbiologist and molecular biologist with systemic mastocytosis, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Adrenal Insufficiency, and an assortment of other chronic health issues. My life is pretty much a blast.

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 55

69. What routine monitoring should mast cell patients receive?

There are not yet routine testing recommendations for MCAS patients, but there are some for mastocytosis patients. Many doctors use the mastocytosis recommendations to monitor their MCAS patients in the absence of specific MCAS guidelines.

Mastocytosis patients should monitor tryptase level annually. In mastocytosis patients, tryptase level is often a good marker for how many mast cells are in the body (although this is not always true.) If a patient’s tryptase is increasing over time, the provider will need to check other things to see if their disease is moving to a more serious disease category.

DEXA scans measure bone density. Osteoporosis is a common complication of systemic mastocytosis. Patients should receive regular osteoporosis screening, even if they are young.

Mastocytosis patients usually receive routine bloodwork annually that includes a complete blood count (CBC), which counts the amount of blood cells a person has; and a metabolic panel, which looks at how well the liver and kidneys are working.

Repeat biopsies are usually only done if the result will change treatment in some way. Most patients with systemic mastocytosis are diagnosed based upon bone marrow biopsies. These don’t usually need to be repeated unless tryptase level increases sharply or there are unusual results in routine blood count testing. Increasing tryptase can indicate that the body is making more mast cells much faster, which is sometimes linked to a more serious disease category. Unusual blood cell counts can indicate not just too many abnormal mast cells, but also other bone marrow conditions sometimes seen in mast cell patients, like myelofibrosis and essential thrombocythemia.

Patients with cutaneous mastocytosis are diagnosed by skin biopsy. There is not usually a need to repeat a skin biopsy for patients with CM.

Patients with systemic mastocytosis are usually diagnosed by bone marrow biopsy but can also be diagnosed as a result of a positive biopsy in any organ that is not the skin. A person can be diagnosed with SM via a GI biopsy.

GI biopsies are a little different than bone marrow biopsies in that there are sometimes reasons to repeat them. GI biopsies may be repeated to see if the general inflammation in the GI tract is improved or worsened. The provider may also be interested in whether or not the amount of mast cells in the GI tract has decreased. The result of GI biopsies often change treatment options so it is not unusual to repeat them. However, unlike bone marrow biopsies, repeated GI biopsies do not tell the provider if the mastocytosis is moving toward a more serious disease category or not.

MCAS patients are diagnosed based upon positive tests for molecules that indicate mast cells are overly active, like n-methylhistamine, and D2- or 9a,11b-F2 prostaglandins. Once the patient is diagnosed, there’s not a clear rationale for repeating these tests, although some providers do for their own information. Some providers like to check prostaglandin levels to see if treatment to stop mast cells from making prostaglandins (like use of aspirin or other NSAIDs) is helping.

However, it is important to understand that the level of mast cell mediators is not associated with symptoms. A person who has a normal level of 9a,11b-F2 prostaglandin may have the same symptoms as a person above the normal level, who may have the same symptoms as a person who has three times the normal level. For this reason, many providers consider these mediator tests to be less about the numerical value of the test and more about whether it’s normal or high, period.

For more detailed reading, please visit the following post:
The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 5
The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 6
The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 7
The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 8
The Provider Primer Series: Diagnostic criteria of systemic mastocytosis and all sub variants
The Provider Primer Series: Diagnosis and natural history of systemic mastocytosis (ISM, SSM, ASM)
The Provider Primer Series: Mediator testing
The Provider Primer Series: Mast cell activation syndrome (MCAS)

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 54

68. How does mast cell disease affect pregnancy?

One of the things mast cells normally do in the body is regulate the female reproductive cycle. Mast cells in the endometrium, the uterine lining that is shed during menstruation, become activated and release mediators in the days before and during menstruation. Many of the symptoms of premenstrual syndrome (PMS) occur because of mast cell degranulation. These symptoms include things like cramps and bloating.

Because mast cells are involved in controlling the reproductive cycle, they are responsive to the effects of hormones like estrogen and progesterone. In particular, estrogen can directly cause mast cell degranulation.

In some allergic conditions like asthma, patients often have flares right before or during their menstrual period. This is often the case with mast cell patients as well. The change in hormones, the built in mast cell activation, and the bleeding, can all cause mast cell symptoms.

A study on the effects of the pregnancy on mastocytosis found that there was a lot of variability in what patients experienced. 33% of women had symptom improvement during pregnancy. In these women, their symptoms mostly improved beginning in the first trimester and continued throughout their pregnancy. 45% of patients had no change in symptoms during pregnancy. The remainder had worsened symptoms.

Mastocytosis did not seem to affect the outcome of pregnancy compared to the normal population. Premedication was recommended at the start of labor. Many women safely received anesthesia. In women who reacted, 2/3 had not premedicated. Induction of labor with medication was well tolerated. Both vaginal delivery and Caesarean section was performed safely on women with mastocytosis. The frequency of Caesarean section, miscarriage, prematurity and low birth weight were similar to the general population.

In some instances, severe allergic reactions and anaphylaxis can induce early labor, so patients should be aware of this risk.  Histamine can trigger uterine contractions.

An important thing to consider is that mast cell patients may have to change or stop some of their medications while pregnancy to avoid effects upon the fetus. In particular, the use of epinephrine is discouraged in pregnancy because it causes uterine contractions. Mast cell patients should have an alternative plan for anaphylaxis that excludes epinephrine where possible. Any mast cell patient who is pregnant or considering becoming pregnant should have detailed discussions with their providers about it.

For more detailed reading, please visit the following posts:
Pregnancy in mastocytosis
Effects of estrogen and progesterone and the role of mast cells in pregnancy

What we are

I’m on vacation right now. I flew to Florida last Friday. I have been staying with my friend, Pat, in Naples since Friday. On Thursday, she will bring me to visit my friend, Kristina, who lives a couple of hours away. Thursday night, my friend, Nicole, will pick me up from Kristina’s and bring me back to her horse farm to stay for a few days. I met them all online in a time when my life was a constant struggle to live with mastocytosis. I have since had adventures with each of them. All of us have mast cell disease.

I have recently regained a lot more control over my disease and my life. I started Xolair in March. Two days after receiving a Xolair injection into each arm, I could eat solid food again. I have steadily acquired more foods, including things I thought I would never be able to eat again. Cherry pie, my all time favorite food, and one of the first things I lost. Girl Scout cookies. Tacos. I am relearning not just what I can eat, but how to eat. I am re establishing a relationship with food. I am finding a new path in which food is not a dangerous necessity.

I have difficulty moderating myself with foods I have regained. My stomach is still tiny. My GI motility is still garbage. My stomach is still largely paralyzed. I have to remember that platefuls of food will still sit in my stomach for hours, whether or not I have a mast cell reaction. I can still make myself by eating too much too fast.

It is the same with activity. I can be outside in the heat a lot longer. I can sit in the sunlight. I can push myself physically without it ending in disaster. If I go too far, I pay for it. I still need to sleep. I still need to adhere to a rigid med schedule. I still need to manage my stress level vigorously. But my body will bend now where it would previously have broken.

Today, while my friend and her husband were out at an appointment, I took some meds, put down a yoga mat, and started a documentary on my iPad. I found a vinyasa yoga sequence I wanted to do. It was 92 degrees out and very humid, the sun blazing overhead. I stopped every five minutes or so to drink some water, wipe myself down, and rest. I didn’t mind going slowly and stopping when my body needed it.

The heat started to overtake me. I sat down and assessed my body to see if I could continue. I just wanted to see if I could do it, because I genuinely thought that I could. This was not a stubborn line in the sand. I believed I could do it safely. But I did not want to push myself too far. And I was very hot.

As I was coming to terms with needing to end my practice early, it started raining. There’s rain and then there’s southern Florida summertime rain. The kind of rain that falls so heavily that you almost can’t see it. I walked out from under the roof of the lanai and into the falling torrents. I closed my eyes and and let the water overtake me.

Water is a purveyor of emotion and memory. I was transported to a million other moments when my body was strong. When I walked my first Breast Cancer 3-day through similar heat in the first week of August 2007. When I climbed mountains in Norway. When I camped underneath the Golden Gate Bridge and walked across it on a misty San Francisco morning. This strength has always been there, even if it has been buried my disease.

The nature of this disease is that there is no real nature. It changes constantly. You can never really adapt because you can’t even comprehend what changed. You just learn to control the spin amidst an unpredictable world. Sometimes not even that.

This is the first time in a long time that my recent stability has not given me anxiety. In the past, it has been hard for me to be present. I worried a lot about how long this reprieve would last. It was excruciating to think that I could accept this good fortune only to have it torn away without warning. I felt so exposed. Vulnerable. I didn’t want to risk another heartbreak.

The last few years have been painful on every level. Even so, it is silly to think the adage in the fable of my life could be that bad things happen anymore than it could be that good things happen. They are two sides of the same coin. These two faces are matched. You cannot have gain without loss. Getting knocked down is no more important to my story than is the getting back up.

I am also surrounded every day by other people who have triumphed against this disease. Pat has made some strides this year in identifying important pieces of her health puzzle. Nicole was recently admitted for a serious line infection but she is home now and in one piece. Almost two years after a catastrophic stroke that left her trapped inside her body, Kristina has just started working on standing. This disease has threatened to drown us but we surfaced anyway.

As the rain washed over me today, I remembered that strength is not something we have. It is something we are. And just like that, I wasn’t hot anymore.

 

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 53

66. How long does it take to react to a trigger?

There isn’t a straight answer to this. The time it takes to react to a trigger is hugely variable. It depends upon the trigger; the strength of the reaction it triggers; the patient; the medications they take; their lifestyle; and other activities that may increase or decrease reactivity. As we have discussed before, the reaction you see from a trigger is often the cumulative result of how much histamine you have circulating at the time, which can be affected by many other things. Reactions can happen immediately or several days later. It is not unusual for mast cell patients to react days later, especially to things they have ingested. This logically makes sense to me as a result of the trigger still being in the GI tract but there is still not definitive proof that explains why you can react days later.

67. What physical things trigger mast cells?

A lot of physical things trigger mast cells. The exact reasoning for why some of these things trigger mast cells is still not well understood. However, these triggers are documented in literature, often as triggers for physical urticaria (hives caused by physical triggers) and/or angioedema (swelling). While reactions to these triggers often start in the skin, the mast cell activation can spread to other mast cells elsewhere in the body. Additionally, patients may not have skin symptoms but have reactions to the following triggers.

Heat and cold can both activate mast cells. Hot water and cold water are both common triggers. Water in general is a trigger for some. Emotional stress is activating, as is various forms of physical stress, including exercise, surgery, physical trauma, infection, or increased activity of another disease. Sweat can be a trigger, regardless of whether the patient is sweating from exercise, heat, or something else. Pressure on the body, even mild pressure, can cause mast cells to release chemicals. Sunlight and vibrations are also known triggers. Mast cell patients are recommended to premedicate before any medical procedure, including imaging like ultrasounds, X-rays or MRIs, as patients have reported activation from these things. Changes in barometric pressure, such as from a change in weather or a storm, are often reported by patients to cause symptoms.

For more detailed reading, please visit the following posts:
Chronic urticaria and angioedema: Part 2

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 52

64. Why do I always have dark circles around my eyes?

It is not unusual for people who are having allergic reactions to have “allergic shiners.” Allergic shiners are dark circles around the eyes, especially evident under the eye where they may look like “bags.” There is not a definitive reason for why they occur but it is thought to be the result of poor circulation near the sinuses. In these patients, nasal congestion is common. This interferes with the normal circulation of blood near the sinuses. The blood “backs up” and pools in the blood vessels nearby. These blood vessels expand to accommodate the extra blood in them. Since the skin is very thin around the eyes, when these blood vessels expand, you can see the blood through the skin, giving an appearance of a dark circle under the eye.

65. Does mast cell disease cause hair loss?

Yes, sometimes. Mast cells release huge amount of prostaglandin D2 (PGD2). They release so much PGD2 that testing for it in urine is one of the more common steps in diagnosing mast cell disease. PGD2 has been linked to hair loss, especially in the scalp of men who experience hair loss. Exactly how PGD2 causes hair loss is still heavily researched, but it seems to stop hair follicles from maturing normally.

PGD2 causes an array of far reaching symptoms. For this reason, many mast cell patients take medications or supplements to decrease mast cell release of PGD2. Aspirin and other NSAIDs are often used. These medications interfere with specific molecules called COX-1 and COX-2. Without these molecules, cells are not able to make prostaglandins like PGD2. There are a number of supplements that can also interfere with one or both of the COX molecules. Curcumin or turmeric is sometimes used for this purpose. (Keep in mind that aspirin and NSAIDs are NOT safe for many patients. Patients should never add a medication or supplement without discussing it with a provider that knows their specific health situation.)

Some medications commonly used by mast cell patients can also contribute to hair loss. H2 antihistamines can sometimes cause hair loss. Some NSAIDS may also do this, even though they should help stop hair loss as I mentioned above. In more serious instances of mast cell disease, patients may need immunosuppressants, interferon therapy, or chemotherapy. These can cause varying degrees of hair loss, too. Steroids like prednisone may also decrease hair production.

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 51

63. Why do many mast cell patients gain weight? Why can’t they lose it?

The most common question I get about weight is “Why am I gaining weight when I can barely eat?” Weight gain, or failing to lose weight, is not unusual for mast cell patients. There are a lot of reasons why this happens.

One of the big reasons why mast cell patients gain weight is because mast cells release molecules that cause inflammation. Some of these molecules are known to be linked to obesity when there is too much of them in the body. Mast cells release some of these molecules, like TNF, and IL-6.

Leptin is a hormone released by mast cells that can contribute to obesity. Patients with obesity often have higher than normal levels of leptin in their blood. In these patients, it seems like leptin doesn’t work as well as in others, so their bodies need to make more leptin.

Leptin’s job in the body has long been thought to tell your brain that you are not hungry. More recent research suggests that leptin doesn’t exactly tell your brain that you’re not hungry, and instead tells your brain that your body is starving. The body responds to this “starving” signal very strongly by trying to maintain or gain weight, and to maintain or gain fat stores.

Mast cells live in adipose tissue (fat tissue), often in significant numbers. Leptin level somehow controls the amount of mast cells in adipose tissue (fat tissue) but we are not sure how. Leptin is one of the ways that mast cells tell other cells to become inflamed. It tells cells to make more inflammatory molecules like TNF, IL-2 and IL-6. Mast cells in inflamed spaces can also attract cells from other parts of the body to come and make more inflammation.

Leptin also directly opposes another hormone, ghrelin. Ghrelin is the hormone that tells your brain that you are hungry. When leptin is high, ghrelin is low. Importantly, ghrelin curbs inflammation and tells cells to stop making inflammatory molecules. If leptin is high, ghrelin is not around as much to stop inflammation.

Another way mast cell disease can contribute to weight gain is by swelling. When mast cells are activated, they release molecules that make it easier for fluid in the bloodstream to “fall out” of the bloodstream and get stuck in tissues. When this fluid is stuck in the tissue, your body can’t just pull back into the bloodstream. It takes days for your body to be able to get the fluid out of the tissues and back into a place where it can be used.

Some of the medications used to treat mast cell disease can cause weight gain. H1 antihistamines are probably the drugs most commonly used for mast cell disease. They can cause weight gain. Steroids like prednisone and methylprednisolone cause swelling and weight gain.

Mast cell patients often have difficulty maintaining a normal sleep schedule. Sleep at night is often not restful because mast cells are very active at night. Not sleeping well can cause inflammation, contributing to weight gain.

Exercise can be very tricky for mast cell patients as well. Many patients are deconditioned and out of shape so even low impact exercise can be exhausting or impossible. Mast cell patients often have restrictions on what exercises they can do safely so vigorous exercise to help regulate weight might not be an option.

Mast cell patients often have little control over their diet due to food reactions, reacting to the process of eating, or having other GI conditions like gastroparesis. Safe foods may not be “healthy” and can contribute to weight gain. (Potato chips are a huge part of my diet as a food that is always safe for me.)

I personally struggled with my weight for years as a result of mast cell disease. It has been my experience that reducing inflammation overall is the only way to lose weight. Of course, it is very difficult to reduce inflammation when you have mast cell disease. In my case, I found that a reconditioning program helped me immensely. This is not safe for everyone and you should never start an exercise program without discussing it with the provider that manages your care.

 

For more detailed reading, please visit the following posts:

Leptin: the obesity hormone released by mast cells
Exercise and mast cell activity
My exercise program for POTS and deconditioning
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part One)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Two)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Three)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Four)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Five)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Six)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Seven)

Catharsis

Hello, MastAttackers and Other Good People of the Internet,

A warning that I am about to be super sappy and emotional.

As MastAttack has grown into a sort of rare disease cultural touchstone, my life has become progressively more complex and more stressful. My role as a community resource affects every part of my life, and not always in a good way. In particular, the past year has been difficult for me, for a lot of reasons. There are days when I wake up and want to blow it all up and dye my hair brown and return to a life of anonymity.

But I never do and that’s exclusively because of you guys. It is my privilege to belong to this MastAttack community with all of you. On the hardest days, you really keep me going. You believe in me and that is so, so powerful.

Revealing the plan for MastAttack U to all of you has been cathartic. I am not a fan of secrets and keeping this a secret for so long really disconnected me from the community. On a more selfish level, I was also worried that you guys wouldn’t like it. The positive response to the announcement for next year’s courses has honestly been humbling and overwhelming. It has been my dream for a long time. I don’t have words to describe the feeling I get when I think about being able to teach this course to all of you.

MastAttack may be my idea and my project but it doesn’t really belong to me. It belongs to all of us in this community. It is not something that I am doing. It is something that we are doing. Together, we have an opportunity to develop hundreds of capable advocates for mast cell disease. We could change the way mast cell disease is treated and managed. We could directly impact our own care and the care of other patients by understanding our disease and how to teach others about it. The next generation of mast cell patients could be born into a world where there are hundreds of patients who have educated hundreds of physicians.

In order to achieve this, I have to believe that this will work, and I do. I believe in all of you the way that you believe in me. There will always be hard days and we will learn as we go along what works and what doesn’t. But we are a team. We can do this. I know we can.

So thanks for believing in me and in MastAttack and for being my people. It is pretty much the only thing holding me together sometimes. Sincerely.

I am leaving tomorrow evening to visit with some friends and take a much needed vacation through August 14. After 5pm tomorrow, I may pop in and out a bit online but will mostly be unavailable. I have set up some auto posts on the blog to continue the MastAttack 107.

Any and all questions/patient/meeting requests/masto related communication will be returned after August 14. In the event of an emergency, please contact one of the MastAttack admins for the Facebook group. They can get in touch with me.

Thanks for everything. Hope you guys all have a super week!

Xoxo,
Lisa

Support Lisa

Hey, all,

I do not believe that people should have to pay for access to information that allows them to understand their health. For this reason, MastAttack blog posts, consults, questions answered via chat or correspondence, and the upcoming Spring 2018 course is free for everyone who would like access to my knowledge.

People often ask if they can pay me for my time or assistance. For the reasons stated above, I have never charged anyone. After a lot of thought, given the amount of time and energy I dedicate to MastAttack, I have decided that if you would like to send me some money, and are in a position to do so, that I will allow that for the first time.

No one needs to pay me. Paying me does not get you any additional attention or favor. I am committed to providing a space where money does not impact the quality of information people receive about their health. However, I have some major direct and indirect health related expenses coming up so if anyone would like to express their gratitude by sending me some money, that would be lovely. If not, that is perfectly fine, too. Really.

I just set up a YouCaring account here and a Venmo account under Lisa Klimas. Money can be sent that way. Please note that MastAttack is NOT a non profit and that any money you send is a gift, not a donation. Thanks!

xoxo,

Lisa

MastAttack U: Introduction to Mast Cell Biology in Health and Disease

Hey, MastAttackers,

My long term goal for MastAttack has always been to teach mast cell patients everything they needed to know about mast cell disease to advocate for themselves effectively and to help others. This week, I was able to share that goal with my fellow MastAttackers. I am really humbled by the outpouring of support from my readers and the mast cell community. I cannot believe that I get to do this and I’m so glad I will be doing it with you guys. You keep me focused and help me fight on the hard days.

I have gotten a lot of questions regarding the logistics of MastAttack U so I figured I would answer them here.

This spring, I will be teaching an eight week course called Introduction to Mast Cell Biology in Health and Disease (MAU101). I do not yet have firm dates for the course but I expect it run for April and May. The purpose of this course is to teach material that allows a person with basic understanding of mast cell disease to build upon the knowledge. I will teach intermediate concepts specific to mast cell biology while also teaching the general biology necessary to understand it. For example, when I talk about the CKIT D816V mutation, I will first give a short explanation of what mutation means, how mutations happen, and why exactly mutations can affect the way cells function. Students will build an understanding of general biology in addition to specific mast cell concepts.

Every week, I will post a video in which I teach material by lecturing. The video will be posted on the blog and will be publicly available. I expect them to be 20-25 minutes long. Videos will be captioned and transcripts will be available when the video is posted. Once the video is posted, it will stay up indefinitely. You do not have to watch the video on the same day it is posted. You will be able to watch it at any time that is convenient for you.

I received a question about whether or not it is okay to translate my course materials and lectures into other languages for non-English speaking mast cell communities. This is fine as long as they are used for educational purposes and people are not charged for the materials.

The class format will basically be that I post a video on a specified day of the week every week for eight weeks in a row. Let’s say I post a new video every Tuesday. (Just picking a random day for this conversation.) The following Monday, we will discuss the contents of the video in a group discussion in the MastAttack Facebook group. People will be able to ask questions about the content at that time. I will have a list of prepared questions about that topic for us to discuss at that time as well.

Each of the eight lectures for this first course stands alone. This means that you do not have to watch all eight in order (or at all) and participate in all eight discussions. If you want to watch the first and second video, then aren’t interested in watching any more until the sixth video, that’s fine. You do not need to have seen the preceding lectures to benefit. All group discussions will be locked at the end of the discussion period but will still be available for anyone wanting to read it. This course is designed to be inherently flexible because we as a patient group need flexibility. The purpose here is to learn in a safe environment, not to add more stress and responsibility to our plates.

This course is open to every single person who is interested, whether they have a connection to mast cell disease or not. You do not have to have a science background. I will try my very best to make the science accessible to laypeople. I would like to know the names of everyone taking the course for my own edification but if you’d rather not tell me, that’s okay, too. You do not need special permission to access the videos or additional course materials, all of which will be on the website. If 800 people want to watch the videos every week and come to the discussion, everyone is welcome. With a lot of people, I expect there will be some hiccups as we figure out the best way for us to all communicate, but I’m sure we can sort it out. I will be relying on the help of a few admins and the good nature of students to keep things manageable.

I have the good fortune to know a lot of people who know a great deal about mast cells. For people with high level understanding, I will be running a Master class, probably in the fall. This course will be very different from MAU101 and enrollment will likely be restricted. This is because in order to ensure that students are learning difficult concepts, there must be assignments and I must review them carefully. I have a general idea of what I want the course to look like but will wait to share until I have more concrete plans.

I mentioned that my initial dream was to teach five people everything I know about mast cell disease. This is still my dream and my intention. I have not chosen anyone yet to mentor and will not for a few months, at least. If you are interested in being mentored by me, you are welcome to contact me and let me know. If you are not in the first group of mentees, please do not give up. The point of this transfer of knowledge is that the people I mentor will be responsible for mentoring another group of people. There will be plenty of opportunities for people to learn from me in this way. Again, once I have more concrete plans, I will let everyone know. In the meantime, if you think you might like to be mentored by me, take the MAU101 course and see how you like it.

A number of people have reached out to ask if they can compensate me for the course. I have decided that if people are able to and want to, that I will accept money from people to help offset some of my health care costs. I need to set up a mechanism for this and will tell people when I know exactly how to do that.

I do not have plans currently to incorporate MastAttack as a nonprofit for a few reasons (although I do plan to establish it as a legal entity). It is important for people to realize that any money contributed is not a donation and therefore not tax deductible. It would instead essentially be paying me for a service.

Please keep in mind that no one is obligated in any way to pay for this course. Many of us have astronomical expenses or would prefer not to pay for other reasons. This is perfectly fine. It will not affect your standing with me. Seriously.

I am so wicked excited that this dream has finally evolved into something tangible. It has been in the works for a long time and there were times when I was sure I would never get it done. I appreciate the kind words and support I have received since announcing the plans for MastAttack U. I don’t know how I got so lucky that I get to do this. I cannot wait to build a legion of mast cell patients who know their disease inside and out.

I’m leaving in the morning for my annual Girls’ weekend with my sister, cousins and friends, so I will be out of touch for a few days. Hope everyone has a swell and reaction free weekend!

Xoxo,
Lisa

MastAttack position on Mast Cell Activation Syndrome

In the unlikely event that it is unclear where MastAttack stands on mast cell activation syndrome:

MCAS is a serious, debilitating disease that directly causes an array of symptoms that often interfere with the daily living activities of patients who have it.

MCAS increases the risk of anaphylaxis, a potentially fatal, severe allergic reaction.

MCAS patients require careful management of their condition to stay healthy and safe. Overwhelmingly, this requires medication. There is nothing wrong with needing medical management of MCAS. You are not doing anything wrong by taking medications prescribed by a knowledgeable provider.

MCAS patients are more likely to have other disabling conditions, such as gastroparesis, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and various autoimmune disorders and immunodeficiencies, among others.

Patients with MCAS sometimes need an extraordinary level of nutritional intervention to prevent malnutrition, starvation, and complications thereof.

Patients with MCAS sometimes require central intravenous lines to facilitate nutrition, use of IV fluids, and IV medications.

Patients with MCAS sometimes require GI tubes to facilitate nutrition and medication use in patients who are not able to take foods and medications orally.

Patients with MCAS often live complicated, stressful lives. Their experiences do not deserve to be mocked or minimized. They should under no circumstances attempt to manage their disease on their own without medical supervision without detailed conversations with their own care teams.

Patients with MCAS often repeatedly suffer the indignity of having their very state of health questioned and belittled by providers, family members, coworkers, and the public. This is especially an issue where it concerns medically complex children as unfamiliar providers may incorrectly assume that these children are receiving unnecessary medical interventions, sometimes resulting in removing the child. All of these situations can discourage MCAS patients from seeking care and can endanger them.

The idea that MCAS patients cannot die of complications of their mast cell disease and other diagnoses is ridiculous. I know MCAS patients who have died from anaphylaxis or from the inability to receive needed therapies without anaphylaxis and shock. We are fortunate as a community that these deaths are rare, but to insinuate that they do not happen is both incorrect and disrespectful.

The recent “controversy” about whether or not MCAS can be serious and disabling is shocking and has been difficult to watch. I do not often find myself truly stunned. While many patients are fortunate to be able to live safely while managing MCAS, we all know a number of MCAS patients who are not able to achieve stability, and who require aggressive medical and surgical management to stay alive. I cannot believe I have to say this.

MCAS patients are an integral part of the mast cell community. Please support them now.