Long Covid and MCAS: "These diseases haven't left me for 3 years!"

Hello Elsa, you agreed to speak to Carenity and we thank you for that.

First of all, could you tell us more about yourself? 

My name is Elsa, I am 31 years old and I live in the Bouches-du-Rhône region. I have been in a relationship for 8 and a half years with a wonderful man. My passions are dancing, singing, the Reunion Island and my job which is a bar manager. 

When did you contract Covid-19? What were your symptoms and for how long? How did you live the disease? 

I contracted Covid-19 in January 2020. I was "asymptomatic" which is to say that I did not have a severe case. 

It was not so easy to diagnose at the time: I had a smaller version, with shortness of breath and tachycardia peaks, speech and vision problems, fatigue more pronounced than usual, a kind of sinusitis. 

Over the following days, muscular pains were added, a little bit of fever... In short, everything that can make think of a temporary cold. 

But the days went by and my condition did not improve. Other symptoms arrived like bloody diarrhea, a modified taste (metal), hives... 

I lived on in the beginning, let's say, normally. My doctor at the time thought it was a stroke, but it wasn't, so I wasn't really that worried. But when the symptoms started to multiply, I asked myself a lot of questions. But mostly "what is happening to me?".

For several years now, you have been experiencing symptoms of Covid-19. Can you tell us more about this? What are the consequences of Covid-19? 

Since January 2020, the symptoms have never left me and have even gotten worse. Certainly because of a major diagnostic error, with a diagnosis with the famous "it's in your head" by way of psychiatry... But, one day, a new internal doctor took over my file, knowing that, when I was in psychiatry, I was looking for what was happening to me until I then stumbled upon mast cell activation syndrome (MCAS), and Long Covid. 

During the meeting with this doctor, she examined me, questioned me... and the diagnoses fell out - MCAS, covid long and others: Ehlers-Danlos syndrome, a CVID (Variable Common Immune Deficiency), as well as other infections which woke up like the Epstein-Barr virus (EBV), Lyme disease... 

The nature of the long covid is still being questioned but several hypotheses have been submitted with research mostly done abroad - between viral persistence, immune system dysfunction, altered microbiota, impact on blood coagulation... 

As for the frequency, the long Covid and the MCAS became my companions day and night - they have not left me since nearly 3 years... The intensity of the pains varies but it never really leaves. I can be "well" one hour and, the hour which follows, to find myself not being able to do anything any more because the symptoms are so broad that we can reach up to 50 daily symptoms! 

Are these symptoms disabling in your daily life? 

Of course, in my case and in the case of many others, we have lost a large part of our mobility. And, even for those who can walk, it's an ordeal because the list of symptoms is so huge and can affect any part of the body and sometimes at the same time! Whether it is the neurological, cognitive, gastroenterological, gynecological, dermatological, muscular, articular, blood circulation ... and of course at any time!

You also suffer from MCAS (mast cell activation syndrome). Could you tell us about the disease and its symptoms? What impact does it have on your daily life? 

Mast cell activation syndrome (MCAS), simply put, in the definition that I often give, is "allergic to life". It is an overreaction of the immune system to several factors that trigger various symptoms. They can be food (often foods rich in histamine and/or salicylates, gluten, lactose, sulfites...), infections, pesticides, sunlight, stress, odors and chemicals, perfumes, insect bites, mold, smoke, medications, excipients... There are a multitude of factors that amplify the symptoms of AAS.

The symptoms are also very numerous, I couldn't possibly list them all. This disease can affect any part of the body, even the brain. In my case, I am very affected on the dermatological level: hives, angioedemas, gastroparesis, hormonal disorders, dry eyes, hot flashes, thermoregulation problems, anaphylaxis, constipation problems, diffuse pain, diarrhea, asthma, various food intolerances and so many others... 

What is complicated to manage with this disease is that one day you can react to something and the next day not react to it. It's a constant roller coaster.

This pathology has a huge impact on life, because you have to imagine it in today's world. The simple example of smells: you enter a store, a pharmacy, a doctor's office, or you pass someone who has put on perfume... you can react to it! Of course, the attacks of the disease are not the same for everyone, but it can trigger symptoms. 

And what is also very complicated is that, sometimes, we have delayed effects. For example, eating a meal that, at the time, is fine, and finding yourself 24 hours later with major gastroenterological, dermatological or other problems... 

Mast cell activation syndrome is a rather complicated disease. Moreover, it is very poorly diagnosed because the multitude of symptoms is so different from one person to another. 

Do you think that mast cell activation syndrome (MCAS) is a complication of Covid-19? What do your doctors say? 

MCAS exists in 3 forms: primary, secondary or idiopathic. 

It is likely that MCAS was resting in me and that, indeed, the Covid-19 virus came to awaken it very strongly.  

What is your current management? What are your treatments? 

My current treatment is good. The doctor who follows me is doing her best and is very attentive, but she is a bit helpless because research and treatments are not progressing as they should. 

MCAS is a pathology that existed before covid with various treatments mainly antihistamines. 

The cases of MCAS increased strongly because of Covid-19 and I would say that the research on this pathology was not relevant enough for those who already suffered from it before. 

To this day, it is really complicated to administer treatment for people with long covid and MCAS , as the basic treatments for MCAS have a hard time working for long Covid + MCAS and are sometimes even a failure. 

For my part, I tried many treatments but I was just having big allergic reactions to these treatments which should have calmed everything down. I still take an antihistamine, a mast cell stabilizer and I am on immunoglobulin for my CVID. 

You are active on social networks under the name Ailes_a. What topics do you cover? Why did you decide to talk about the disease on Instagram? 

My Instagram account has really changed since the disease. It used to be pictures of landscapes and now it's pictures of my daily life with the disease, information about MCAS and long covid. 

It's a little less cheerful but it's the reality of my daily life. I decided to talk about it because, having undergone the diagnostic errance until the psychiatry, it allowed me to show, that indeed, it was not "in my head". 

Moreover, talking about it on the networks also allows me to do prevention because long covid and MCAS are diseases that are not very well recognized and, given the diversity of symptoms, it is not always easy to know what you have. 

Of course, one should not convince oneself that it is necessarily these diseases. Nevertheless, it is important that people are made aware of what the Covid-19 can do after the infection. 

My account is therefore used to do a little prevention, to inform, help, support... I have also received many messages from people thanking me because they were able to get a diagnosis after reading my story.  

My account is also used to talk about a reality: the daily life of many patients! 

It's been almost 3 years since the discovery of Covid-19 and research is not progressing fast enough... Covid-19 has taken a long time to be considered. But even if the disease is recognized by the WHO, the HAS, the ARS... many doctors still deny its existence.  

What do you think social networks and other health forums bring to patients in the management of their disease(s)? Do you think it is important to be informed about your pathologies? If so, why? 

Social networks brings a lot by helping people feel less alone, or understanding better what happens to us. 

Health forums are very helpful, as well as support groups, because there are often administrators who are also careful about what can be said. So it's more monitored than social networks. 

It is important to have these platforms because sometimes we feel alone with our loved ones because they do not feel the disease as we do. It is interesting to be able to talk with patients suffering from the same diseases as us, to be listened to but above all understood. 

What are your plans for the future? 

I continue to carry out actions for Long Covid and MCAS and even for other chronic diseases! I continue to raise awareness, to share, to ensure that prevention in the face of disease is done, that solidarity continues to exist! 

And, above all, I wish to be cured! 

What advice would you give to Carenity members who are also affected by a chronic disease? 

I don't think I have much to advise because people with chronic illnesses know each other more than anyone else. But solidarity is really important regardless of the disease. 

Any last words? 

One last sentence: thank you for giving me the floor! 

And the last word: Hakuna Matata! 

A big thank you to Elsa for her testimony!    

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