Two faces, the same name, the same past, the same present and the same future. Two faces, the same soul and emotions. The same things are matter for them and same things they love. Things are precious for them (people, activities, their job), things they love to do and they are fond of (travelling, going to a trip, going for a walk, making a picnic or just biking near the lake, going out for a concert, a drink or a dinner). Imagine that You lose these one day to another. Everything what were self-evident until now are disappear at a dash. Moreover You don't know how long is it lasts for ever or "just" for a few years? The name of the robber is Multiple Chemical Sensitivity (MCS) and You can't even angry to it because it teaches You many things. First of all it teaches who are the people who are important and care for You.
On the other hand it teaches about how unaware are we about the condition of our home (the Earth) and how rude we are with it. It is proved long ago that the human activity causes this and we have to stop it. Right now. We have the knowledge we have the chance to make it better. Imagine how big is Your world now and how small can be if You don't care.
We feel that life sometimes unfair or just rewrite our cast and destiny. The society is disinterested, people sometimes even rude, there is completely absence of understanding and caring for others. One thing I have surely learnt for a lifetime: no matter how hard it is never give up. We have to take care of ourselves and others. Raising awareness of Mast Cell Activatiom Syndrom (MCAS) and Multiple Chemical Sensitivity (MCS)
My name is Judit Bedecs. I am a Hungarian woman. I have graduated as an econonomist in 2009. I lived a normal, active life like other people. Life has dramatically changed for me 3 years ago when I started to react first almost to all foods and then to my own environment, scents and wide range of environmental triggers. First I didn't even realise what causes my life-threatening anaphilactic reactions what I have experienced many times before I even know anything about this disease. Now I know Multiple Chemical Sensitivity and Mast Cell Activation Syndrome (MCAS)* causes it. I reacted to different medical treatments very bad, I had instant anaphylactic reaction from my medicines and after injections. Me and my mother had to move from our old house because I can't tolerate it any more. It was very unhealthy so we had to move, I have moved about four times since but we Still can't find a safe space for me because there was leak in the houses where we were and the previous occuppants used harsh chemicals because of mold in old buildings. Unfortunately we can't afford a new, special house which would be safe for me. Moreover now we live in a condo which is very dangerous for me because of other occupants. They don't understand the situation and they are even angry to us when my mother try to vent from the stairways the laundry detergents and Fabric softeners what come from them when they open their doors. For me these things are life-threatening even in the slightest amount. I never know how my body react. I can't even go outside because there are many triggers (the house is very close to the main road so if I go outside without a mask it results anaphylactic reaction. Many times I have to wear my mask inside as well even though we have two high performance air purifier one right after the entrance and one in my room) They even see the emergency car and paramedics but they don't care. My mother has to wake up before 4 o'clock in every morning and she has to spend most of her time outside (until about 7:30 or 8:00 when parents take their children to school and leave to work) and then between 11:30 am and 12:30 pm when neighbours leave to afternoon shift and in the evening when they come home, to prevent me from life threatening reactions. My life depends on my neighbours when they go our, when they wash their clothes (they don't understand how dangerous it is for me and they use strongly smelled fragranced products that's why I had Anaphilaxis several times. Now it's 20 Celsius degree in minus in Hungary so I am fear of she is getting sick.
We really need help to be able to move from here but we don't have enough money to buy a house. I couldn't work for 3 years because of anaphylactic reactions, perfumes, scents everywhere, I am homebound for more than one and a half years. My mother is retired. Please help us to be able to buy a safe space for me. We have to move to the mountains maybe it will help to improve a little my condition to be able to go outside, go for at least a short walk every day. Now I am the prisoner of my room. I had been an active girl and I really miss these things. Now because of my mast cells are very unstable due to the bad environment in our condo I am very unstable and can't go outside because of the unpredictable reactions from almost everything (pollens, tobacco smoke, car exhaust gases, laundry detergents, fabric softeners, perfumes etc.)
Here in Hungary we don't have any help, my mother is my only caregiver and it's very hard for her alone. We haven't got any support from the government. We need help because now I am financially unable to pay medical costs and clean foods I can eat (emergency medication, spare kit of epi (adrenalin-injection) , masks, filters for air-purifier machines etc and we need oxygen concentrator and a nebulizer,the necessary supplements because I can't eat many of the foods)
*What are mast cells?
Mast cells are "master regulators" of the immune system. They come from bone marrow and go into all tissues of the body. Some diseases, such as mastocytosis, derive from an increased number of mast cells. Others, such as Mast Cell Activation Syndrome (MCAS), are the result of the activation of mast cells.
"What are Mast Cell Disorders and Mastocytosis?"
Dr. M. Castells, American Academy of Allergy Asthma & Immunology, Video, 7/28/16
Some diseases, such as mastocytosis, derive from an increased number of mast cells. Others, such as Mast Cell Activation Syndrome (MCAS), are the result of the activation of mast cells. But did you know that many other diseases and disorders have been found to involve mast cell activation, including asthma, chronic fatigue syndrome, coronary hypersensitivity syndrome, eczema, fibromyalgia, idiopathic anaphylaxis, irritable bowel syndrome, multiple chemical sensitivity syndrome, neuroinflammation, postural orthostatic tachycardia syndrome (POTS), psoriasis, and even autism. [show/hide more]
Mast cells are "master regulators" of the immune system. They come from bone marrow and go into all tissues of the body. Each mast cell contains secretory granules (storage sacs), each containing powerful biologically active molecules called mediators. These can be secreted when mast cells are triggered, leading to allergic and inflammatory diseases.
In allergies or anaphylaxis, mast cells can release the content of all the secretory granules rapidly (degranulation) in response to foods, drugs or insect bites. Mast cells can also release specific mediators selectively in response to heat, odors, stress, as well as bacterial, viral or yeast infections.
The release of mast cell mediators can be unpredictable and can affect multiple organs in children and adults. Symptoms may include: skin rashes, flushing, itching, hives, muscle and bone pain, fatigue, gastrointestinal issues, nausea, vomiting, headache, difficulty concentrating and remembering (brain fog), depression, anxiety, mood fluctuations. as well as chest tightness, blood pressure changes, difficulty breathing and swallowing symptoms typically associated with life-threatening anaphylactic shock.