Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Welcome to our forum.
  HomeHelpSearchLogin  
 
Pages: 1 2 
Send Topic Print
Direct/Indirect Sunlight (Read 13006 times)
TallBird
Tutor
**
Offline


I Love YaBB 2!
Posts: 38

Direct/Indirect Sunlight
08/12/12 at 19:44:51
 
Does anyone know why mast cells degranulate in sunlight, and secondly, whether they can/will degranulate even if you are exposed to indirect sunlight in a room?.  I already know that I react in direct sunlight however I am sure my symptoms also kick in if bright sunlight reaches me in a room.  Or am I just going crazy...

Wishing everyone a trigger-free day! Smiley
Back to top
 
 
IP Logged
 
CrystalG
Tutor
**
Offline


If you are at peace, you
are living in the present

Posts: 63
Maine
Re: Direct/Indirect Sunlight
Reply #1 - 08/13/12 at 01:48:42
 
I dont know why they degranulate in sunlight, but I have the exact same issue you do. If i am exposed to sun at all, whether it be outside or just sitting in a car and it hits my leg which is covered in jeans, I start to have an attack (hives, rash, swelling, flush, burning, etc). I would like to know the answer to this as well, but just wanted you to know you are not alone.
Back to top
 
 
IP Logged
 
TallBird
Tutor
**
Offline


I Love YaBB 2!
Posts: 38

Re: Direct/Indirect Sunlight
Reply #2 - 08/13/12 at 08:00:14
 
Thanks CrystalG for reassuring me that I'm not going crazy Cheesy

Would still love to know the answer though if they degranulate in indirect sunlight?  Does  anybody know please?

TallBird
Back to top
 
 
IP Logged
 
Anaphylaxing
Guru
*****
Offline


Hang in there! You can
do it!
Posts: 836

Re: Direct/Indirect Sunlight
Reply #3 - 08/13/12 at 15:09:09
 
I get this too direct or indirect sun and the heat they cause. Not sure if there's an explanation out there other than it's a known trigger, maybe the heat is involved. just speculations.
Back to top
 
 
IP Logged
 
kimtg68
Guru
*****
Offline



Posts: 545
Alabama
Re: Direct/Indirect Sunlight
Reply #4 - 08/15/12 at 17:45:09
 
I don't know the technical or correct answer to this. But I would say there is a reaction to direct sun from the UV rays (because I tried a tanning bed and thought I was going to pass out and I had TONS of fans blowing so I didn't feel hot) but also heat sources will cause me issues as well like a hot shower or bath, cooking over a hot stove or washing dishes in hot water. So I'm guessing heat and UV rays. Not sure though about the UV rays. It's just a GUESS Tongue
Back to top
 
 
IP Logged
 
PJP123
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 193

Re: Direct/Indirect Sunlight
Reply #5 - 08/17/12 at 05:42:44
 
Yesterday I was trying to lower my blinds in my kitchen.  I have a double layer, 1 pleated shade and 2 bamboo on top.  I was trying to lower both of them and they were getting twisted and stuck and the sun peeked in
and within a minute I was flushing, heart racing and I had to stop and sit down.  Crazy right.
Back to top
 
 
IP Logged
 
CrystalG
Tutor
**
Offline


If you are at peace, you
are living in the present

Posts: 63
Maine
Re: Direct/Indirect Sunlight
Reply #6 - 08/18/12 at 02:38:31
 
PJP that is crazy and sad that we can't even sit by a window or lower blinds. I was sitting in my dining room and the sun was hitting the side of my arm through the window and all of a sudden I was flush, developing hives, etc. I feel like I have to be a bat, only go out or be around the windows after dark.
Back to top
 
 
IP Logged
 
PJP123
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 193

Re: Direct/Indirect Sunlight
Reply #7 - 08/18/12 at 09:02:54
 
I tell people I'm a vampire.  My 11 year old daughter thinks vampires might be real so she cocks her head and looks at me like "Really".  LOL
Back to top
 
 
IP Logged
 
Doozlygirl
Mentor
****
Offline



Posts: 262
Wisconsin
Re: Direct/Indirect Sunlight
Reply #8 - 08/18/12 at 11:21:12
 
The vampire comment got me thinking.  Bear with me as I try to convey  my thoughts.  

Early into my diagnosis of autonomic neuropathy, I was tested for porphyria as a possible cause of my failing autonomic system.  Porphyria is the rare genetic defect that causes those who have it from being able to tolerate being in the sun.  While I react in the sun, I can tolerate it with the correct precautions.  I learned there are multiple types of porphyria, (7 or 8 if my memory serves me correctly), so the symptoms may be on a spectrum.  

I bring this up because in the paper by Drs Moldings, Afrin et al, on page 4 in Table 4, lists the diseases that should be considered as differential diagnosis for MCAS.  Porphyria is listed under endocrinolgical disorders.  

http://www.jhoonline.org/content/4/1/10/table/T4

To me, that means there is enough connection here that porphyria should be considered. ruled out in those with those symptoms.  

Best wishes,
Lyn
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: Direct/Indirect Sunlight
Reply #9 - 08/18/12 at 17:39:28
 
In mast cell disorders sun and heat are better tolerated when medication is dosed adequately.  If you want to be able to go out in the sun or to tolerate a little heat every now and then, you might want to talk with your doctor about additional meds to take before exposure.
Back to top
 


Joan
 
IP Logged
 
PJP123
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 193

Re: Direct/Indirect Sunlight
Reply #10 - 08/21/12 at 03:39:20
 
I saw on yahoo news today that in China they wear "Facekini"s so they don't get sun on them.  They hate the sun too!  Wouldn't I get a few stares at my town's public pool showing up in this get up.  Google Facekini for a laugh.
Back to top
 
 
IP Logged
 
kimtg68
Guru
*****
Offline



Posts: 545
Alabama
Re: Direct/Indirect Sunlight
Reply #11 - 08/21/12 at 17:27:37
 
Those facekini's would probably make my heat intollerance flare. They look hot! Funny looking too. Almost alien.
Back to top
 
 
IP Logged
 
KatFromMD
Ex Member





Re: Direct/Indirect Sunlight
Reply #12 - 08/22/12 at 03:42:14
 
The facekini hits a little too close to home!  When we go to Hawaii or the Caribbean, in order for me to go in the water (which is tropical but still cold for my poor body) and not fry to a crisp from the sun, I wear a wet suit, scuba booties and even gloves!  (My hands are particularly sensitive to even the slightest sun exposure.)  I'm covered neck to toe in black neoprene.  I've considered getting a scuba head covering just like those facekinis, but I just couldn't bring myself to go that far - I look like enough of a freak as it is.  Now having seen the lighter weight and lighter colored facekini, I'm half tempted!
Grin
Back to top
 
 
IP Logged
 
PamH
Mentor
****
Offline



Posts: 447
Indianapolis, IN USA
Re: Direct/Indirect Sunlight
Reply #13 - 08/24/12 at 08:43:21
 
Haha, I just tell people that I can't be in the sun because I will burst into flames!
Back to top
 

Pam
 
IP Logged
 
PJP123
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 193

Re: Direct/Indirect Sunlight
Reply #14 - 08/25/12 at 15:08:52
 
One of the mast cell doctors spoke of a man who self combusted and he was pushed in to a pool to cool him off.

Today I went to my daughters 1st travel soccer game and sat in the sun on bleachers.  I wasn't there 10 minutes and I was about to combust.  My husband was sitting behind me and I turned to him and said I'm sick I'm freaking out I have to get out of here and got up and left for my car (we took 2 cars cause the 1st game was at 7 AM.  He asked why I was sick.  He will never get that this is with me every minute of everday.  I came home and was in bed in the air conditioning the rest of the day.  

Tomorrow is round 2 of soccer.  2 games, 1st one at 7 AM.  I don't want to go.  This is so unfair to my poor 11 year old.  She understands though.  
She's so smart.  She said we could video tape it for me to see.  That girls a genious. LOL
Back to top
 
 
IP Logged
 
Pages: 1 2 
Send Topic Print