ALLOIMMUNOCOMBOCYTOPENIA

OK, So alot of you ask me from time to time about my illness/condition called "Alloimmunocombocytopenia". So I thought I would take the time to describe what little I do know  about it to you.

First - I have had this condition for a very long time, but when I was little - no one knew what it was. I got made fun of alot and my parents just thought it was me.

I first knew I was a bit different after kindergarten. I had sores all over my legs and arms. I always thought I had chicken pox that wouldn't go away or that I was allergic to mosquitos. My gradmother would always yell at me for picking my scabs and kids at school called me "Scabatha". My parents did NOT take me to the doctor, so until I went on my own, I just always thought it was my fault.

In 1991 when I had Jordan I left and moved to New Jersey with Adam. Being in the military made it easier for me to ask doctors what they thought. I went to several and all I ever heard was I needed to stop making things up, I was a hypo chondriac or that I had allergies. I already KNEW I had allergies. DUH ! I didn't need doctors to tell me that, or that it was all in my head.

I gave up on doctors for quite a few many years because I was just basically tired of hearing the same things from them.

So in 1997 when Adam got out of the military (the first time) and we moved back to Indiana from Jersey, I got pregnant with Hannah. The pregnancy went fine, but she was born ill. At that time - I did not know that I carried a continual virus known as Group B Strep or what my condition I had was still. Hannah's Strep turned into Meningitis and within 24 hours, I was told she might die.

Not until that time did I ever think of returning to another doctor because of the past ones I had - had. Once Hannah was released and able to come home, I sought out another doctor.

Once again, I was told by a doctor in my home town that I was trying to get attention or that my only problem was allergies. I was pretty livid, so once again my faith in doctors was gone and I did not go back.

Adam signed back up for military service in January 2001 again ... he worked alot where he had been and as a reservist until after 9/11. They sent him here (Ft. McCoy, WI) on active status at the end of 2002.

So now - Lets bump along to 2003, feeling good not too many problems, good year, VERY good year ... then in August we were told to go ahead and move to WI (the kids and I had been in Indiana - driving every weekend here.) In February 2004, I got pregnant with Cameron. All was good and doing well until October 4th of 2004. I had not felt him kick all day, and the mild man that he is - he had not stopped since I noticed him starting, I told myself that if it wasn't ok by morning, I would go to the hospital. October 5th - 2004, I did just that. I was not expecting him to be born that day. I wasn't due until the 16th of October, so I figured I still had time.

Instead they found that my placenta had ruptured and if I didn't have an emergency C-Section that Cameron would most likely not have made it. My doctor was Dr. Schanhofer (a new doc finishing his residency) 

 he delivered Cameron. He was also the main reason that I found out that I have my condition now.

During my pregnancy, I had BADDDDDDDDDD heartburn, so bad EVERY day I threw up - the WHOLE 9 months ! It was just awful. After Cameron's birth they had sent him from our small town here to LaCrosse - the biggest place around here. They neonatal doctors were great, they asked so many questions and with Doctor Schanhofer's help they came up with a conclusion. My body had in fact been fighting off Cameron THE WHOLE TIME ! and I didn't even know it ! I had NO idea how close to death he was or that I had - had that serious of a condition. A condition that they said they only see one in thousands have.

ALLO - IMMUNO - COMBO - CYTO - PENIA.

HUH ? It took me a while to get that one ! But yet, I was relieved ! I DO ACTUALLY have something ?!?!?!?!

My body attacks itself.

This makes more sence to you don't it. ?!

It is an immune disorder that can mimick many disorders all at one time or just a few.

My condition is NOT contagious, nor does it have a known cure and can be fatal in some  cases they have come across.

Now, let me explain this is a more normal sence -

My symptoms can range from skin attacks (sores) usually I get them now on my arms only - but as a child arms and legs. The skin on both is mostly 80% scar tissue instead of skin. Since the skin IS an organ, I can also get 'sores' on other organs as well, hence the fatal part, but usually they are called ulcers or liesions. One on the heart, lungs or liver can kill, one such on the kidneys would mean medial attention would be required, but may not necessarily kill me.

I have no inside to my nose. (I think it is called a deviated septum) - I can stick something in one nostril and pull it out the other, this dissolved 10 years or so ago. I have not had a stuffy nose since that time, but get bleeds alot.

I bruise easily, my joints swell , I get ticks and tremors, and have a very low hormonal balance. I also have severe asthma.

Basically any part of my body suseptible to being attacked, can be.

I get days when I get very sore and can't lift things or even open the milk or juice to get a drink. Like some that have RA. - other days my arms or legs will just fall asleep on me, sometimes continuesly.

From the outside (unless you see the sores) I appear ok, but most days I am not.

I constantly have this cold feeling going on and get migraines easily. It is hard to cope. All of this makes depression quite easy for me to slip into.

I have to remain on meds (or I am supposed to) the rest of my life in order to fight the germs that can invade me to make me sick. I mentioned earlier that my doc scoulded me because I had not recieved my flu/phneumonia shot this year, I had phneumonia 2x before and once they had to slap me to get me to breathe. I can remember it was just so easy to stop breathing and it felt better than just doing so. I was in alot of pain.

So if you have ever had a severe cold, that is a usual day for me. You feel all achy inside and just wana rest. Well , that is good because sometimes I get severe fatigue - others, I get insomnia. Strange huh ?

My body has gone haywire. The longest I have ever slept was 2 days and the logest I have ever stayed awake is 5. Yes, in a row.

When I am pregnant however the doctors I was transferred to at the Mayo Clinic actually find that my body repairs itself and will attack the baby, causing the platelets of the baby to drop significantly. Which can mean a severe bleed for the baby and death. However with my medications I am (usually) on now, this would not ever be a concern again.

Upon getting pregnant with Gracie and being sent to the Mayo clinic they told me they only see 1-5 people from all over the world come in with this condition in a normal year. They were very eager to 'study' me, but we drive 3 hours there and back, so this was something I have since denied. I do go there 2x a year though to get an IVIG which takes up to 5 hours and also make sure my platelette counts are ok and get labs done regularly.

The picture above shows you a shot of my arm - and folks - this is calm. Sometimes I get sores that can number greatly. I get asked alot if I have Chicken Pox or Aids, but niether is true, even though I have had Chicken Pox 3x now.

The other picture I have up is of my doctor ... Dr Schanhofer. He is my doctor now. A Godsend to me.

If you have any other questions, please feel free to ask me and I will try to answer them to the best of my ability. I just wanted to be able to share this with everyone so that I don't always have to answer the same questions all the time.

Thank You.

TAMMIE