How rare is MBL deficiency?

I have two immune diseases: autoimmune urticaria and an innate immune system deficency called MBL (mannose-binding lectin) deficiency, which I heard was very rare. I am loking to find any information on either or support groups available.

[rthornton]

Here are a couple of sites with some information.  One suggests that MBL occurs in 3% of the population (not too rare).  I hope this helps you find more information!

http://www.patient.co.uk/showdoc/40025187/
http://www.emedicine.com/ped/byname/complement-deficiency.htm

And this site has some discussion of autoimmune urticaria:

http://www.aocd.org/skin/dermatologic_diseases/urticaria.html

Good luck to you.

[mblmom]

MBL is not rare, however is a primary immunodeficiency disorder. You should check out Immune Deficiency Foundation. MBL deficiency is a compliment deficiency. Check out this site: http://www.primaryimmune.org/publications/book_pats/e_ch13.pdf and http://www.primaryimmune.org/about_pi/about_pi.htm. MBL was rare, but now that there have been so many studies, it has found to be more common then led on. It never goes away as it is a genetic disorder. But, there are many things that you can do to help prevent infectious diseases. Good luck to you.

[helyanna]

Have you infections often? How are they treated?

I was diagnosed with MBL deficiency today. The doctor said that MBL deciciency occurs in 15% of people. I have also some  IgG3 deficiency. I am 64 years old and have chronic sinusitis and possibly chronic tonsillitis. Other diseases are hypothyroidism, hyperparathyroidism, muscle dystonia, etc.

[shel1]

Hi

I also have MBL Deficency as well as CFS and Alpha 1 antitripcine, MBL Seems to come with other Autoimmune problems and sometimes lots of them. I have had Phnewmonia,Quincy and Viral Menengitis all due to severe MBL Deficency. I have battled and battled to get answers and still i struggle I get constant Recurring Chest and Ear infections as well. it is a living nightmare. I would be very intrested in hearing if anyone else has had anything simular.  

[hazelann70]

Hiya,

My daughter has just been diagnosed with low MBL as I had been diagnosed with zero MBL.  I've never really had any health issues other than abscesses (HS).  However, she is a walking nightmare.  She suffers badly from allergies and when she gets an attack it can last for a few days rather than a few hours.  She has problems with her stomach which often cramps.  She had to have 2 blood transfussions but they don't know why her FBC was so low. She is a 16 year old kid who has had to have so much time off college that she's now got to re-sit the entire year.  The poor kid is a mess.  Yet I wouldn't have known that I have this problem as I've never suffered from anything really.  One cold every 18 months to 2 years in general and never been alergic (allergic) to anything other than plasters and morphine!

My middle son has special needs and they thought at one time he had hypothyroidism.  He's been on growth hormones for nearly 2 years though as his pit gland is small and obviously wasn't working correctly.

It does seem odd that some of us can sail through life with no problems yet others like my daughter is dogged with problems all the time.  Saying all that, she never had problems up until about 5 years ago so how weird is that?