Cathie F. Harrison
P. O. Box 824
Graham, TX 76450-0824
harrison@niinet.net

October 21, 2002

Dr. Joseph M. Cummins,
President and CEO, 
Amarillo Biosciences
800 West Ninth Avenue
Amarillo, Texas 79101-3206

Dear Dr.Cummins,

Were it not for the misfortune of my having Behcet’s Disease,
we would have probably never crossed paths. It has been my 
sincere pleasure to become acquainted with you; from the very
first contact we had, you have been thoughtful, kind and most 
generous. It is in response to your generosity and benevolence
that I write this letter to you for early on you requested a 
medical history from me, this is my attempt to fulfill that 
request, tardy as it is.

My name is Cathie Harrison, I am a 47 year old female, I was 
born in 1955 by C-section, (mother was too sick to endure 
labor) within a few days I had to be taken back to the doctor
as I was bleeding from my rectum. It was presumed that I had 
a bleeding ulcer, but as I understand it the blood was bright 
red which would mean that the ulcer was in my colon. As I 
have researched BD, I have come to believe that I was born 
in a flare probably because mother was so sick (probably a 
flare, as I believe mother had BD). 

During my childhood I was diagnosed as having Hayfever/Asthma 
and could not go out and play alot because, I would wind up 
in an allergic mess. The doctors also diagnosed me as having 
had Measles 15 times and Chicken Pox twice; they just 
scratched their heads, how could this be? Well I don’t 
believe it was, I think that I broke out in pustules from 
BD and they had no clue what that was, so they labeled it 
what they knew about. The basis for my conclusion is that 
they didn’t behave like 3 day Measles, their course was 
always erratic and random. I remember because mother made 
me stay in a dark room and I could not watch TV while I was 
broken out; back then it was thought to save eyesight. The 
point being I counted days to when I could get out of that 
room and they never matched what I had been told.

Not to brag, rather explain, in elementary school the 
teachers wanted to advance me in grades, because I was very 
bright; but then I would seem to dummy up, as they called it.
Based on the fact that I remember having had ulcers in my 
mouth off and on all my life; I now think that I was having 
flares manifesting as Neuro & GI-BD. When I was 18 I had to 
go to the doctor for stomach pain, as I had gone on Birth 
Control, the doctor suspected that was the problem; but he 
had me get GI x-rays. The results revealed that there was 
not a place on my stomach that did not have an active ulcer 
or a scar from an ulcer. I remember his remark, “What has 
done this to you?” A phrase I have heard more than once 
since then. 

In my early twenties, I was suffering from lower abdominal 
pain so severe I would almost pass out and went from 
Gynecologist to Gynecologist seeking the source; I was 
repeatedly patronized and patted on my head, well women 
do have these sort of things. I finally found an old OB/GYN 
that diagnosed me with irritable bowel, he gave me a 
prescription and that took care of it for the most part 
after a change in my diet. (NO I can’t remember what the 
pill was, though I have tried to several times, I only 
remember it as white with pink and blue flecks in it.) I 
must say here that the problem was as much that I was 
unaware of how specialists zone into their area and ignore 
all others, so it was my “fault” for not seeking the right 
specialist. (I assumed, albeit incorrectly, that any doctor 
could diagnose where the source of a problem was; at least 
point a person in the right direction, not a single younger 
one did!) 

Age 23, when I became pregnant with my daughter, late in my 
4th month, I started having break-through bleeding and had 
to quit work or risk losing her; I was pretty much on bed 
rest for the duration. Then when I got pregnant with my son 
everything was pretty normal until, my membrane ruptured the 
35th week and the doctors were forced to induce and deliver. 
Once again, as I searched for answers to what BD is and does, 
I was astonished to find that both of these complications of 
pregnancy could be linked to BD.

At 27 I had to have a Hysterectomy due to a complete prolapse; 
after the birth of my second child my supporting ligaments 
did not return to normal. I know that this was the source of 
the swordlike sharp pains I was suffering from, that would go 
up and down my spine and any other direction through my 
abdomen; they were so severe that I would drop to my knees 
when they hit. When I woke up from surgery the pains were 
gone!!!! (I found the other day that this too was BD, under 
Connective Tissue disease, the ligaments lose their 
elasticity)

Please understand that I have not included any of the series 
of times that I was sick and passed it off as a virus or 
allergies; I just adjusted and went on, for I had no choice. 
I had no idea that I was slowly being robbed! My children had 
a lot of medical problems and I had to focus on their needs; 
I was a mom first, last and always. It was sometimes a great 
battle to get the doctors to acknowledge that they were sick;
never could figure out why.

About age 35, I went into a tailspin and wound up in the 
emergency room in a Fort Worth Hospital; my blood pressure 
was at 90/40. The endocrinologist that examined me said, 
"Your system is shutting down, but I don’t know why." So 
he ran series of tests, thyroid, ACTH and God only remembers 
what else and in the end he surmised that I had crashed 
through menopause and started me on Estrogen Replacement 
Therapy. Oral hormones did not help (something about my 
liver breaking them down before my body could access them) 
so he put me on vaginal cream; it worked and I started to 
exist again. Chalk one more up for BD it can attack any 
organ and it had attacked my ovaries.

I had not been to a doctor since I was 35, I was feed up 
with the run around I got and decided I was just a 
hypochondriac it was all in my mind, that I could not be 
that sick. I slowly started declining in all areas of my 
health and found myself in a pit I could not climb out of 
about 3 years ago. So I went to my Family Physician, 
thought I would start out there and see where he sent me. 
He thought the weakness and pain I was having was due to a 
sleep disorder; so he wanted to have a sleep study done. 
(It would take me all day to get a load of laundry done by 
the time I got all the clothes gathered up, I had to sit 
and rest for an hour; then I could go and get them out of 
the washer and put them in the dryer. I would return after 
a nap and spend the rest of the afternoon getting them hung 
up; I could not raise my arms for very long that they did 
not just give out on me and I had no grip strength at all.) 
Well as it turned out the doctor I was referred to was a 
neurologist that I had seen many times with my children over 
the years. 

Dr. Bartel wanted to evaluate me before he decided what 
direction to pursue; and pursue he did, he is like a hound 
dog that gets on a scent and won’t leave it. Going from one 
thing to the next in succession and from his finding no pulse 
in my ankles to a full central nervous system evaluation; he 
sat me down and said, “You have lost over 50% use of your CNS.
"Then he asked me, “What has done this to you?" Like I had a 
clue, he was the doctor, he asked, "Are you diabetic?" Answer 
not that I know. "Are you an alcoholic?" Answer I don’t drink.
He stated that those were the only two things he knew of that 
could possibly cause this kind of damage. (With 
qualifications) So we started down a path of cocktails of 
meds to see what would help.

Nine or ten months later, the Neurotin and Vioxx; after 
adjustments in dosage, seemed to be helping some. Then came 
the ulcers, which I feared were a side effect of the Vioxx; 
I did not want to give up my Vioxx! I knew to report any sort 
of weird stuff; but how could this have anything to do with 
what was going on with me? When I went in for my next 
appointment I tried to explain to the nurse that I was 
having ulcers on ALL "mucous membranes," I was sure it 
didn’t have anything to do with anything, but she wrote 
it down. Please don’t take my Vioxx away!

The door to that room flew open and in ran Dr. Bartel; "How 
long has this been going on?" What been going on? "The ulcers" 
you mean now or all my life (it was in this moment that I 
realized I had had these off and on all of my life, they 
were a part of my life to such an extent that I had stopped 
"noticing" them) "Any genital - rectal ulcers?" (Needless 
to say this conversation was not headed where I had expected 
it to go.) All I could do was nod yes; I was so mortified! 
Dr. Bartel looked me face to face and said "Short of a brain 
biopsy, I am 99.99% sure you have Behcets Disease." I am 
thinking BRAIN BIOPSY?!? I have the shits Disease!?! He 
turned and wrote the name on the examine table paper and 
tore it off as he handed it to me he said, "Go home, get 
on the net and look it up." 

The thing I like about Dr. Bartel is that he treats all his 
patients with dignity and respect as well as acting like 
they have a functioning brain. Then he turned to me and said, 
"Well we have to go in a whole new direction here, drop the 
Neurotin that is not going to help you at all, that’s not 
what is wrong." So he started me on 60 mg Prednisone and 
said "You are in the middle of a monstrous flare and we have 
to get it under control before it can do any more damage." 
In all the times I had dealt with Dr Bartel he had never 
been this precise or certain of the diagnosis, it had been 
"Probably is or could be this." I was to take the Prednisone 
for 3 days and stop for 3 days, that way I would get the 
benefit of the med but not the side effects. (Some people 
have said the dosing was what caused my problems with the 
prednisone, whatever, problems is what I wound up with)

I do not blame Dr Bartel for anything that he has done 
trying to care for me, I blame BD for my problems. It was 
the end of the third round of Prednisone, about 17 days 
later that my daughter took me to the emergency room; I was 
numb all over, could not feel anything and was struggling 
to walk in. Wound up on IV steroids for three days in the 
hospital and left weaker then when I came in. I did not have 
the strength to sit up in a chair; I could not balance 
myself. Once again, I say I do not fault Dr. Bartel; he 
treated me with the only thing he had.

From the time he had given me the diagnosis of Behcet’s 
Disease, till I wound up in the hospital I had been 
researching everything on the net that I could pull up. 
This was the only thing he had given even as a possible 
diagnosis that fit; everything fit, (more all the time as 
I recalled the events I have recited here) while nothing 
else ever had. As I went down the list on the ABDA site, 
(excellent source) I was saying had it, had it, got it now, 
had it, got it now... I had been diagnosed February 2001 
and was in the hospital by March 2001, during that short 
period of time I had taken a crash course in BD.

I had sought to get into a chat room at that time and 
never could get in, after I got out of the hospital I 
knew I needed to talk to someone for my own sanity. It 
took several days for me to be able to sit long enough 
to get on line and do anything, but then I finally got 
into the chatroom. (It was invitation only then and 
that was the biggest hurdle to get over, I was sent 
several responses but none got me in) After I got out 
of the hospital and was strong enough I tried again and 
that time I got in! The very first person that addressed 
me was dotdragonlady, (I had never been in a chat room 
before and so you can imagine what I thought when I saw 
that sign-in name addressing me) I swallowed hard and 
decided I could leave if I didn’t like the way things 
went; so I responded with my situation of being fresh 
out of the hospital. 

Note: This is how I see the big gun steroids and meds 
that people with auto-immune diseases are treated with. 
There is a pest on the wall so you get out your big 
shotgun and blast him with it; yes the pest is dead but 
now you have to deal with the mess that's left.

I must say here that I truly believe that our footsteps 
are ordered of God and that the faith I have in God is 
what has kept me these many years. So when Dot, as I 
have come to know her, said that she knew of an alternative 
to conventional treatment for BD, I was all ears. It 
turned out to be INFa oral lozenges and this being a 
Saturday night, it would be possibly Monday before she 
could e-mail me with information, e-mail me she did. 
The fact that I live in Texas was the problem, where 
was a doctor that would and could prescribe this medicine; 
it is not one you go to your pharmacy to have filled, 
(one day it will be so) even though it has FDA orphan 
drug status for BD.

One week after I left the hospital we had started on 
the INFa, it took me three months to pull totally out 
of the flare, but I did come out at last!!! As I have 
noted my children have been sick alot, (understatement) 
in particular my daughter suffered very similar 
problems to what I had. It was my prayer that God not 
bring me out without her, for I felt she was in need 
of this as much as I; and that is what happened, we 
both were put on INFa. Crystal, my daughter, improved 
as well over the course of time and is now regaining 
her life and planning for a future; which had never 
been a possibility for her before.

I should note that the doctor did not wish to keep us 
on the INFa for an extended period of time; so he did 
not renew our prescriptions for the INFa immediately, 
he wanted to see how we would do without it. Do without 
we did and we nose dived; we were back in full flares 
in less than a week. Even after going back on the INFa, 
it took me two months to regain the ground I had lost 
in that one week; it took my daughter a month to get 
back where she had been. (I am not a scientist or a 
doctor, but I know the INFa has been a miracle for us) 
As time marched on we tried off and on to go off the 
INFa, not by choice; and each time we would go back 
into a flare. My recommendation to anyone trying this 
is to not ever go off; whatever way this resets the 
immune system is not permanent and must be taken daily 
like insulin.

We have now been on the INFa for about 20 months and 
I thank God everyday for you Dr. Cummings and your 
dedication to the research that brought this INFa to 
this stage. I pray it will soon be available to anyone 
in need, just as any other prescription is; because I 
know that the potential to help millions of people 
with various sorts of immune disorders is a very real 
possibility and that is only a small portion it can 
help. I will never be able to give back to you everything 
that you have restored to me through the INFa; but know 
if there was anything in my power that you needed, I 
would gladly and freely give it to you. It is a unique 
opportunity that I have, for most people never know the 
person behind the medicine or technology that changed 
their life; I consider myself blessed indeed to know you 
and the work you continue with.

Sincerely,

Cathie F. Harrison