CNN article: 'Bubble girl' is allergic to life

[PearlGirl26]

A definite win! They even break down the difference between MCAS and Mastocytosis, summarize the relationship between all the diagnoses, good stuff!!

http://www.cnn.com/2015/05/01/health/bubble-girl-allergic-to-life-brynn-duncan/

 

[Valentijn]

http://www.cnn.com/2015/05/01/health/bubble-girl-allergic-to-life-brynn-duncan/index.html

It focuses on Mast Cell Disease, but also mentions EDS and POTS. A pretty good article.

 

[Sidereal]

Same person as in the Cosmo article linked to on @Gingergrrl's thread.

 

[Gingergrrl]

Wow, poor Brynn, but she is handling it well at such a young age. Hoping I don't end up that bad with my current mast cell problems!

 

[Gingergrrl]

Same person as in the Cosmo article linked to on @Gingergrrl's thread.

I didn't read that one yet but I will.

 

[taniaaust1]

That's a great article. I didn't know till I read it that mast cell activation disorder seems to be just as serious as systemic mastocytosis.

My allergist wouldn't give me that skin prick test as he's worried I may go into a life threatening reaction as I had major dangerous reaction and I don't know what it was too which I ate. (I'm suspecting it was to a plum). I need a lot blood tests to work out what I react too in which they don't put the allergen onto you.

But mast cells are located in your connective tissue, including your skin and the lining of your stomach and intestine. They can affect every system in the body, Afrin says, so the disease is capable of causing all the symptoms Brynn experiences.

You have to ask yourself, he says: "Is this poor patient so uniquely unlucky to have acquired so many different, independent problems? Or is it more likely that there is just one thing going on?"

.................

Im looking forward to when the day comes when I can see a mast cell expert as I really think I have some kind mast cell issue going on. Like my uncle with masto it was interesting to note that her BP also goes up too at times as well as low (mine does the same).

Her food allergies change so frequently, keeping track is almost pointless.

That I found very interesting. I had allergies I don't have now... I couldn't have dairy for a long time (headaches from it) but now can have it.

 

[PearlGirl26]

I think so many of us with CFS/ME fall under this cluster of POTS, MCAS, EDS/JHS and would benefit from appropriate treatment. The problem is most of the expert CFS doctors aren't trained to recognize it unless the person is a "shocker" like Brynn or can do circus tricks with their joints, which is a damn shame.

 

[Misfit Toy]

My doctor believes I have MCAS. I react to almost every med or supplement. I find it interesting that she can handle IVIG. So many react to that and myself included.

I'm not as bad as she and I can't even take that.

 

[PearlGirl26]

Have you tried SCIG? It's what's recommended for many MCAS patients bc the side effects are lower. Also, do your doctor premedicate you an do iV fluids before hand?