For many people, finding their soulmate and embarking on a life together is a cherished dream. Those who have achieved such happiness want nothing more than to be with their beloved.
An Unimaginable Situation
Can you imagine what it would be like to have found the love of your life but be unable to touch her? That is the horrific reality one man faced when his wife began exhibiting symptoms of allergies whenever he was around. What would you do if you ever found yourself in such a situation? Would you move out or would you do whatever it took to stay together?
A Normal Beginning
The relationship started off normally enough. Scott and Johanna Watkins were both natives of Minneapolis, Minnesota. It seemed like a match made in heaven. The two hit it off and they lived close enough to each other that they were able to spend a lot of time together. The odds seemed to be stacked in their favor; they were made for each other. They went through all the normal stages of dating, then got engaged and married. Things couldn’t be going any better for the happy, young couple except for one thing: Johanna seemed to develop a cough whenever Scott was near her.
A Mysterious Cough
At first, it didn’t seem like a big deal. Many people develop new allergies as they get older, and Johanna thought that she was simply experiencing a mild allergy. But the cough didn’t go away. In fact, it kept getting worse. Even more troubling is that the cough flared up whenever Scott was around. At any other time, it would have been annoying, but Johanna and Scott were just starting their lives together. What started off as a minor cough kept getting worse with no hope of improvement on the horizon. It was far from an ideal start to a marriage.
At the beginning, it was just a cough. But the cough grew more and more persistent as time went on. Johanna went to the doctor to see what she could do, thinking that maybe she just needed some allergy medicine. Yet doctors couldn’t figure out what was going on with her mysterious illness. Even more puzzling was that the symptoms seemed to be triggered by Johanna’s husband, Scott. The case completely baffled the doctors who spent years making diagnosis after diagnosis, but who were never able to cure the young bride. Over the years, various doctors made 30 different medical diagnoses.
Finally, three years into Scott’s and Johanna’s marriage, the doctors were able to make a definitive diagnosis after dozens of wrong diagnoses. As you might have guessed from the difficulty doctors were having in pinpointing what was causing Johanna’s symptoms, the diagnosis was not a good one. Far from the simple cough that Johanna originally thought she was suffering from, her condition was much worse than anyone could have imagined. Johanna’s health problems turned out to be due to mast cell disease. The diagnosis came as a staggering blow to the young couple. Johanna had gone from having a cough to having a degenerative illness.
Mast Cell Disease
Mast cell disease, commonly known as mast cell activation disorder (MCAD) or mast cell activation syndrome (MCAS) is an immunological condition. In a person without the syndrome, cells in the immune system function together to fight off viruses. When something that could potentially cause an illness enters the body, the cells are triggered to fight off the threat. Someone suffering from MCAD, however, has cells which over-function, which means that they are triggered more frequently and often in greater quantities than in a person with normally functioning cells. The mast cells are housed in the body’s bone marrow and are a critical component of the immune system.
A person with MCAD has mast cells which are essentially working overtime, which can lead to troubling problems. The chemicals produced by the mast cells signal to the body that something is wrong. In a person without MCAD, symptoms such as coughing, fainting, and nausea are typical symptoms of an underlying illness. A person suffering from MCAD, however, will often experience such symptoms even when their body is not under attack from a virus. It is simply their mast cells over-functioning which is causing their body to have these symptoms. In extreme cases, the throat can close off entirely.
A Poorly Understood Illness
MCAD is notoriously difficult to diagnose for many reasons. Part of it is the assorted symptoms that are associated with it. People suffering from MCAD will not necessarily experience all of the symptoms, and they could experience them to varying degrees or even alternate symptoms. This makes it difficult for doctors to pinpoint what is going on with the patient. Many of the symptoms are also indicators of other diseases and many of the characteristics of MCAD overlap with recurrent idiopathic anaphylaxis. Doctors also do not understand the syndrome very well, as the condition is still being researched but is, as of now, still unfamiliar to most of the scientific community.
MCAD is often associated with other illnesses. it is frequently found in people with other immune issues, such as in patients who have common variable immunodeficiency (CVID) and in people who are suffering from Lyme disease. The condition is also frequently found in patients who have postural orthostatic tachycardia syndrome (POTS) and in patients with Ehlers-Danlos syndrome (EDS). The syndrome is closely related to mastocytosis and is often misdiagnosed as mastocytosis. Mastocytosis, though it shares many of the symptoms of MCAD, is different in that people with this condition have an increased number of mast cells, whereas people with MCAD have a normal of mast cells which over-function.
Different Degrees of Severity
Many people with MCAD have mild cases of the condition. It is only in rare cases that the condition become problematic and severely interferes with daily life. Unfortunately, Johanna’s condition was one of those severe cases. Once the doctors were finally able to provide her with the correct diagnosis, they tested her body to see what made her mast cells over-function. Different people have different triggers. Much as with allergies, not everyone is allergic to the same thing. A person may be able to eat strawberries but not peanuts, where a person who has an allergy to cats may be able to eat whatever they like.
A Hundred Triggers
Johanna’s case turned out to be particularly severe. Doctors found that more than a hundred different things triggered her mast cells, causing them to send her body into a frenzy of symptoms. As her condition worsened, Johanna was hospitalized several times, writing on the GoFundMe page set up by her and her husband to help with the costs of her care that she had been in the hospital “more times than we care to count.” Because Scott is one of the things that sets off Johanna’s symptoms, they are often forced to live separately when her MCAD is flaring up.
A Fortunate Twist
Strangely, Johanna doesn’t show any serious symptoms of the disorder around her brothers and sister. While it’s odd, her ability to be around her siblings proved to be a silver lining. Johanna may not be able to be near her husband without her body turning against her, but she is able to be near family. Her brothers and sister took over as her main carers, as they are able to be near her while her husband cannot. Scott, meanwhile, is only able to come into contact with Johanna when he is bringing her to appointments at the doctor or to the emergency room.
A Rare Condition
MCAD was discovered less than a decade ago and new cases are rare. This means that not only is Johanna separated from her husband but she also doesn’t have people to talk to who understand what she is going through. Johanna described the awful things her body goes through when her mast cells overreact by saying, “It attacks my throat and my lungs and I start coughing and I can’t stop. Then my vision will completely blur and my throat will become tight like Darth Vader is doing a chokehold on me. My whole body goes into intense pain and I get migraines so badly that they actually leave bruises on my head.”
A Treatment Plan
Since scientists still know relatively little about how MCAD works, they have not yet found a way to end the syndrome. There is no cure for the condition, and many of the treatments are largely experimental. Johanna’s doctors have done what they can for her, but nothing has been able to alleviate her symptoms. One of the treatments they tried was chemotherapy, which not only failed to provide a solution for Johanna’s condition but also left the young woman feeling weaker than ever. Meanwhile, the young wife was separated from her husband, just a few short years into their marriage.
Johanna and Scott have told their story to many media outlets, in the hopes of raising awareness about Johanna’s condition and so that Scott can modify their home so that the two might be able to live together again. Scott told People that Johanna has to live in an air-locked room, 24 hours a day. “Johanna hasn’t left her room in a year except to go to the hospital. The only way we’ve kept her alive is through extreme precautions – her room has an airlock on it, multiple HEPA filters and her windows are covered because even UV light can cause her cells to trigger. It really is crazy.”
Johanna is unable to tolerate many foods because of her condition. There are only 15 foods—including spices—that her body doesn’t react negatively to. Johanna eats only one meal per day, and eats only one of two meals. Her entire diet consists of organic grass-fed beef, water, celery, ground lamb, organic cucumbers, carrots, and parsnips. Although her light diet has made Johanna very thin, she is optimistic about her diet saying, “I have been eating these same two meals for over a year of my life and they still taste good to me. I love to eat — it’s a joy for me. It’s just a gift that I can keep eating these foods.”
A Sad Development
Sadly, the home modifications meant to allow Johanna to live under the same roof with Scott didn’t work. When Johanna went to move into the refurbished home, the smell of the house completely overwhelmed her. Her body rebelled, and the scent caused her to collapse. It came as a devastating blow to all the people who had worked to bring the two under the same roof. The couple have always dreamed of having children and Johanna wanted to be a stay-at-home mother, but that dream is becoming harder and harder to realize with every setback. Still, Scott remains devoted to his wife and is confident they will find a way to be together.
The pair stay connected through the wonders of technology. Though they cannot physically be together, they are able to call each other on Skype and cell phones, email, and text each other through the day. Separated in different rooms, they will often watch TV shows together each on their own laptops. “It’s been very painful,” said Scott. “But when you can’t see the person you love you have to do things more intentionally. Through this, my love for my wife has grown.” He said that the couple loves to watch the Food Network. Scott admits that this “sounds totally bizarre” since Johanna cannot eat many foods.
A Strong Faith
The couple remain optimistic that a miracle could happen. Johanna continues to work with her doctor to find a treatment plan will work. Meanwhile, the couple have leaned on their faith in God to bring them through the tough times. Johanna admits that she was not so religious before her diagnosis, but that her condition has caused her faith to deepen. “I didn’t pray much before this but now I try to pray for the people I know,” said Johanna. It’s my way of helping and it keeps me focused on things other than myself.” Johanna and Scott prove that love will always find a way!