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The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 56

70. What is premedication and when should I do it?

Premedication is taking extra medication in advance of doing something that you expect to trigger your mast cells. The current premedication protocol for mast cell patients is as follows:
Prednisone 50mg orally (20mg for children under 12): 24 hours and 1-2 hours before procedure
• Diphenhydramine 25-50mg orally (12.5 mg for children under 12) OR hydroxyzine 25mg orally, 1 hour before procedure
• Ranitidine 150mg orally (20mg for children under 12) 1 hour before procedure
• Montelukast 10mg orally (5mg for children under 5) 1 hour prior to procedure

This protocol was developed for the Mastocytosis Society by Dr. Mariana Castells and the original can be found here.

This premedication protocol uses medications to interfere with the molecules mast cells release as well as medication to decrease the amount of molecules mast cells make and release. Diphenhydramine (called Benadryl in the US) stops histamine from getting to the H1 histamine receptors on the outsides of many cells. Ranitidine stops histamine from getting to the H2 histamine receptors on the outsides of many cells. In these ways, these medications can help to stop symptoms from histamine released by mast cells.
In a similar way, montelukast stops leukotrienes from getting to receptors on cells. This helps to curb some of the symptoms that occur when leukotrienes are released by mast cells.

Prednisone is a glucocorticoid, commonly called referred to as a “steroid.” This medication suppresses the production and release of inflammatory molecules by mast cells and other immune cells. Importantly, this medication can take hours to achieve maximum effect. This is why the first dose is the day before the event for which you are premedicating. By being dosed again a couple of hours before the event, it can also provide some additional protection for delayed reactions.

It is important to know that this premedication protocol may need to be changed to achieve the most effective protocol for individual patients. These recommendations are general and are not based upon study or clinical trial data.

This procedure is intended to be used for all major and minor medical procedures, including imaging tests like x-rays and MRIs, whether or not they use contrast. However, many patients find some benefit in premedicating for other types of events as well, such as flying, childbirth, and days of planned elevated physical or emotional stress. Patients should discuss what sorts of events are appropriate to premedicate for with a knowledgable provider.

For more detailed reading, please visit the following post:
Premedication and surgical concerns in mast cell patients

The West Coast Florida Tour and an update on Kristina Brightbill

I realize how lucky I am to be able to travel at all but that doesn’t mean it is easy. Travel always takes a lot out of me. I start premedicating days in advance. I count and organize meds and supplies to pack and repack. I try to prepare myself for the emotional and logistical stress of air travel with luggage full of IV bags, line supplies, and dozens of bottles of pills and vials of IM and IV meds.Even when everything goes smoothly, I need a ton of meds, sleep, fluids, and easily digestible food to recover and get closer to my baseline.

The fact that I travel as often as I do is largely a testament to my friends. I am lucky to have such incredible people in my world that all the strain and stress of traveling to visit them is worth it. Being with people like that has a way of pushing away all the stressful things about my life. I also come home feeling peaceful and more like myself.

I met my friend Pat a few years ago when she came to Boston for MCAS treatment. She lives in Hong Kong for most of the year and was my coadventurer on my trip to the mainland China and the Great Wall. She prosecuted murder trials in Toronto for years and has an endless reservoir of fascinating stories. Her husband is wonderful and the most organized prepared person I have ever met. Their daughter is currently in university and is funny and bright. She actually did some behind the scenes organization of the blog this past spring. This family is very special to me.

On Thursday, they kindly drove me two hours away to see my friend, Kristina, and her family in Sarasota. I met Kristina a few years ago when her son had no safe foods and was reliant upon her breast milk produced by Kristina while she was surviving on a two food diet.

In October 2015, Kristina had a catastrophic stroke in her brain stem. I have written about this in great detail and am not going to rehash it but you can read about her here, here, and here.

Kristina has locked in syndrome as a result of her stroke. Her mind is completely intact but she was completely paralyzed and unable to speak. People ask about her a lot and Kristina said it was okay to give everyone an update.

The scariest part of Kristina’s stroke was the amount of things her family was told she would never do. They said she would never be able to communicate. They said she would never breathe without a ventilator. They said she would never eat. They said she would never regain any movement. They said she would never recover any of the function she lost.

Kristina started recovering some motion in her head, neck, and face when she went home in June 2016. She could communicate by spelling words by blinking when someone recited the alphabet to her. It was a very slow process and very taxing for Kristina and her family.

Kristina worked in physical therapy before the stroke. When she went home, she had an amazing support system of friends who were physical therapists, occupational therapists, and speech/swallow specialists. These incredible people donated their time to give her many hours of therapy not covered by her insurance. These people, along with Kristina and her relentless family, have helped her to regain an astounding amount of function.

Kristina can move her arms and legs, although some of the movements are very small. She can control some fingers and her left thumb. She has much better facials and eye control. She is able to use a Tobii system to communicate now. She types out the words and the system says it aloud. It also allows her to text, make phone calls, and use social media. This incredible technology has given her a voice after almost a year and a half of not having one.

Kristina is getting stronger by the day. While I was there, she did edge of bed exercises where she would balance herself with only support at the very bottom of her back. Her core is now strong enough to support her upright. She can turn her head while sitting up also. She sat up for about twenty minutes without needing a break!

Kristina had a tracheostomy to help her breathe since the stroke. She now breathes normally and medication changes have allowed her to have the trach removed. She also recently had a picc line removed because she no longer needed it. She can chew and swallow and eats a fair amount of purees. She still gets a lot of nutrition through feeds in her G tube but is working towards eating mostly by mouth.

Her overall health profile is hugely improved. She is pretty stable these days. Her stamina is much better. She is able to go out for appointments and errands with a specially equipped wheelchair van. She recently visited an organic farm to discuss growing safe foods for her son who has MCAS.

Last year, I visited Kristina on August 10. She was still Kristina but she was in a bad place emotionally. I firmly believed that if she could get to a better place with her communication that she would regain a huge amount of emotional health.

I visited Kristina this year on August 10 and am thrilled to report that she is in a much happier place. She made the decision several months ago to move in with her parents to make it easier to ensure that she was always getting the very best care.

Her son is with her five days a week and he loves his Mama. She talks to him with her Tobii software and he loves it. He pushes her wheelchair around and likes to eat and watch tv sitting in her lap or in between her feet on the footrest of her wheelchair. His MCAS is also improved although there have recently been some problems with his diet. I am confident that with some effort that we can get him back to a good place.

I stayed for a while and Kristina and I gossiped and shared some funny stories. It was lovely and such a treat to see her feeling much more like herself. Her mind is so clear and her energy is so good and against all odds, her body is continuing to recover. There is literally no medical precedent for this. Kristina is the only person with locked in syndrome known to have regained function after almost a year of no gains and she pretty much did by sheer force of will.

When someone’s body does things I don’t understand, I assume that there is a scientific explanation and I just don’t know what it is. But I have never felt that way about Kristina. Her astounding recovery feels supernatural. It feels like an actual miracle.

I was sad to leave Kristina but was excited that she felt up to meeting my friends who have heard so much about her. She met Pat and her daughter when they dropped me off. Later, she met my friend, Nicole, when she picked me up that night.

I was sad to leave Kristina but was excited that she felt up to meeting my friends who have heard so much about her. She met Pat and her daughter when they dropped me off. Later, she met my friend, Nicole, when she picked me up that night.

Nicole and I met years ago in a mast cell FB group. She was the first person I knew other than myself who also had a port that she accessed and used herself to administer routine and rescue meds. She is half my adventuring partner and half my adopted little sister. I’m currently at Nicole’s horse farm outside of Ocala. This place is so beautiful that I can almost feel it nourishing my soul.

Tonight, I went to a dinner party her parents were hosting and met a bunch of great people. A couple attending did not speak English and I was glad for the opportunity to connect with them in Spanish. It was just an all around pleasant and fun night.

I’m going home tomorrow night. I never feel like I have spent enough time with my friends but it is good motivation to come back soon. I expect I will be back next summer. In the meantime, I am so very grateful to be living this life with these amazing people, and for the refreshed mind and spirit they give me.

Many thanks to all the people who keep Kristina in their thoughts and prayers, it means a lot to her. Kristina’s story is so powerful and a lot of people have connected with it, including lots of people who don’t really know her. A community of caring people can be so encouraging and uplifting.

Alright, time to wrap this up. It’s late and I have an appointment in a morning to ride a horse named Porkchop.

August 10 is Kristina Brightbill day!

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