Sorry, can't help! I seem to be the only mast cell person in my family...and I don't have elevated tryptase...

Its not unusual, Ive seen many people taking about it. The heard part is getting people who are not symptomatic to face their abnormal test results--people are like ostriches if they can be. My family would probably fit this but they refuse to believe Im ill, much less that they might face future problems.  Keep on looking Patricia, I know you will find some families.
hugs
Ramona

I know how you feel.. I have at least 2 other syndromes that I knew nothing about a few months ago. These things seem to come in with other illnesses??

The tryptase levels that I know about are 10, 18, 43 and there are at least 4 more that I dont have results of... they love to give me a hard time getting results and I live in the boonies its a bit far to drive to where the hospitals are and do it in person... yes my IgE level is 1330,.. I also have a very LOW IgM and IgG3. Not quite sure yet of all those implications...
hugs
Ramona

Hi Patricia!

Sorry I didn't reply earlier, I'm really swamped with work right now.  

My family is one yes, but I can't fulfill Dr. Wilson's requirements.  My tryptase is 4.6, one of my son's is 2.6 and the other 5.5.  They are only now being investigated for masto and no BMB have been mentioned.  My BMB is negative so far but I do have pathological damage.

However, the cardiovascular researchers at Harvard are convince that the reason why my entire family has ascending aortic aneurysms is due to ALL of us having this genetic defect and that only some of us have developed the symptoms of masto and I'm the one full blown case.  My son who has the 2.6 tryptase we found that he has MC aggregates in his intestines.  All three of us are confirmed autoimmune.  These geneticists have asked for other masto patients with aortic aneurysms to study because they feel there is a link here.  

Patricia, I have told these scientist as to your request by Dr. Wilson.  They may decide to speak with him for I believe they are all of the same mind - finding that genome!!   If my doctors were to ask me to participate in Dr. Wilson's study and we could find the financial means for us to get up to DC from Brazil, I'd be glad to participate.  But without their involvement in this and with the criteria that Dr. Wilson has of elevated tryptase we don't qualify.  

Please go ahead and tell Dr. Wilson this.  If this is so, and the Harvard doctors agree and work with Dr. Wilson, then this would not be only my 3 children and myself, but it would possibly include each of my 5 siblings and 4 cousins and their families, for as I said, each of my 5 siblings and 4 cousins have these aortic aneurysms and my father and his only sister both died from theirs.  Our children are now under suspicion too.  they believe masto is the common denominator - not the cause for the aortic aneurysm defect, they already have found the genome for that, but they feel that the masto is what made us all develop the aneurysms - that cause the exceptional activity here.  

So, depending upon their conversations, Dr. Wilson may have an entire family of about 20 odd people perhaps to work with.

Lisa

Hi Patricia,

Please don't mind if I can't reply to this right now.  I'll try tomorrow.  I'm reacting to a type of contrast nobody reacts to and I've got my hands full.  Okay?

Thanks!

Lisa