My journey as a young child

 I cannot remember a time where my body was not fighting me. I've also had doctors, family, and school nurses think I was faking 90% of the time, or giving up because a cause couldn't be found. 

   Starting at an early age, my mom had taken me to the ER due to severe stomach pain just below my breast bone. All tests came back normal, and they could never see anything on scans. We would be sent home with a diagnosis of Tietze syndrome. This is copy and paste from Webmd as it is a quick simple explain. Tietze syndrome is a rare musculoskeletal disease that can be painful but is almost never serious. It happens when the cartilage around the joints connecting your upper ribs to your breastbone swells up. Usually the second or third ribs are most affected.

   It could very well be what is/was happening, however the pain and tightening I felt/feel doesn't seem to match it. I still have this happen, but I've learned it is most likely a reaction to something in my body. I will get to how I came to this conclusion later. I don't want to skip around too much and confuse/lose anyone. 

   I had a lot of sensitivities to a large variety of things as a child. I couldn't use Mr Bubbles because it caused an allergic reaction in the lower regions. Oddly my grandma would put baby oil to help it. I still don't understand that but apparently it worked. She passed when I was 5 so that tells you how young I was when these things were occurring. I was sensitive to temperatures, whether it was water, food, outdoors, etc. My baths had to be room temperature, any higher and it felt like I was burning. This too was another area I had trouble getting adults to believe. Many children get to where they hate baths and showers so it would have been easy for those giving the bath to think I was trying to avoid taking one. I do not hold any of this against those that did not believe what I was saying, none of the things made much sense and kids like to tell stories. 

   As a child the with sensitivities to such a variety of things, and the reactions they caused, I completely understand why and how the actual cause was not caught by a doctor. Mast Cell seems to be a ghost when it comes to blood work etc. as a child. 

Please remember this is only about the very beginning and does not mean the things I speak about ever stopped or went away.

   I want to thank you for taking the time to read and learn. This is a lifelong, painful, confusing, and constant thing that can be happening to someone around you. A possible answer can give hope to someone who has lost theirs. A diagnosis can mean a breath of fresh air to someone and a new outlook on life. This takes years to get under control and I am no where near the end, but knowing I am believed, not crazy, not a hypochondriac, and finally getting medication to help, that doesn't make things worse, is a time I never thought I would see.

What is MCAS?

 MCAS is when your mast cells release too many mediators. This causes an influx of histamine.

What are mast cells and why do we need them?

Mast Cells are part of your immune system. These important cells are found throughout your body, especially around blood vessels and in bone marrow.

Whether we realize it or not, our bodies are constantly exposed to things that can cause an allergic reaction. There are times you may not realize what you are feeling is an allergic reaction. They come from being bit by insects, medication, food or drinks, your home environment, where you are or possibly where you have been, and many other ways we normally don't think about as allergic reactions.

What many people don't realize is not all allergic reactions are as obvious as swelling, difficulty breathing, rash, etc. One of those reactions I've never really thought of being an "allergic reaction" is inflammation. I always knew it happened if I got hurt or there was an infection, I just never put 2 and 2 together. Many times we don't realize the inflammation is the culprit causing the problems we are having especially if the problem isn't right where we think the inflammation is. As most of us know, when something is inflamed it is usually accompanied by some internal or external swelling and warmth in the area. This inflammation can cause nerves and other parts of our insides to be pinched, pushed, squished, etc. This chain of events can then cause pain, damage, and a slew of other problems. Ultimately MCAS causes our body to not function as it should.

There are 4  primary areas affected by this "wonderful" syndrome. The skin, gastrointestinal (big one to think about), heart, and neurological.

There are 2 other things that usually are diagnosed along with MCAS; POTS, and EDS. I will elaborate on this in a later post and will include their definitions. This is not something where you are required to have all 3 for it to be your diagnosis. 

While MCAS is not curable, there are ways to help keep it in ✔. This is just a basic run down and I will continue to update this blog with information and examples that we wouldn't think were related.

Just wanted to give a little insight into this strange diagnosis you are wondering why you have never heard of or possibly have had as a possible cause.

Hope when there was none left

 It only took 41 years for one wonderful doctor to realize the variety of symptoms/issues were actually originating from 1 pesky medical diagnosis. Mast Cell Activation Syndrome otherwise known as M.C.A.S. It is very under diagnosed and unheard of across the medical field and the general populous. Mast cells are there to protect us, when you have MCAS and the Mast cells are activated they go into a panic and start releasing everything they have, failing to cease and desist as a normal Mast cells would. It helps to imagine the Mast cell as a person panicking and someone else slapping them to snap out of it, only their someone else is no where around to snap them out of it, so they continue panicking.

    The one amazing, smart, talented, and person I will forever be thankful for is Dr. Clair Francomano. Thank you so much Dr. Francomano! All the times my parents or doctors wouldn't believe what I was saying or thought I had other reasons, like attention, to use being sick or in pain... I thought I'd never find an actual reason for such a variety of things with abnormal reactions to so much. Even as an adult I had multi specialists and it seemed like they would order tests and because they couldn't figure out what it was there would be a referral or no follow up. Dr. Francomano was brought to indiana because of her abilities and knowledge with Elhers-Danlos syndrome, she specializes in medical genetics at IU.

   My wish and hope with this blog is to...

1. Bring awareness to MCAS

2. Hold the light half way through the tunnel to give hope for others scouring the internet for hope. Giving them the knowledge to find the doctor that will hold the light at the end of their tunnel.

3. Let others who are suffering know they are not alone.

4. If it is talked about more, and brought to doctor's attention, the medical community will learn or seek knowledge to the curious name a patient mentioned. 

5. Possibly help someone find hope for others they come across that are suffering and the possibility that they may finally have an answer.

Please share this blog on your Facebook, Twitter, and with others you know who may benefit or know someone who may benefit from my journey and the knowledge I share.

A big thank you to all who take their time to read, follow, and spread what may be that one moment in someone's life when hope shines again.