Believe it or not, there is more to our story than just adoption and fertility. Many people may know… but some may not…. the struggles we have overcome in the past several years. I’ll start with one in-particularly close to me…. and throughout the next few weeks, maybe will get into some of the others!
I want to talk about something that nobody really ever hears… or thinks about. Some of you may not even know these exist in the world, but they do and I can vouch for at least ONE of them!
Have you ever heard of them? Maybe in passing? Maybe not at all?
“Orphan disease is defined as a condition that affects fewer than 200,000 people nationwide”
Bottom line is…. Orphan diseases are RARE…. They are diseases that have no cure, and not much research around them. Many of them have NO treatment options.
So now… you may be asking yourself…
“Ok? …..Why are you telling met this?”
I have an orphan disease.
Neuromyelitis Optica (NMO)– yes I know, thats a LONG word…. in some instances, also called “Devics Disease”
NMO in particular has statistics of about 15,000 cases in the United states and hundreds of thousands in the entire world. Women are more commonly affected than men, with a 7:1 ratio. Adults and children both can be affected by the disease. These statistics are what make NMO an “orphan disease”.
I know, I know… enough with the statistics…… what is it right?
NMO is an inflammatory disease of the central nervous system (CNS) characterized mainly by attacks (relapses) of swelling and damage in the optic nerves (optic neuritis or ON) and spinal cord (transverse myelitis or TM). It can cause temporary or permanent blindness and/or paralysis and may have periods of remission and relapse.
My diagnosis with the disease was a long time coming. Starting in high school I had several instances where I would loose vision in one eye or the other. This would come with intense pain, and an inability to really function for periods of time.
I went to specialist after specialist to no avail- and only for them to tell me that they “couldn’t find anything wrong”.
They were able to diagnose me with optic neuritis, but the cause behind it was something they could never figure out.
After passing out in the elevator on the way to work one night, I was taken to the ED. The MD there thought I may have been having seizures, and connected me with what I now know of as an amazing neurologist.
When I walked in to her office, my mom in tow… I was terrified. Terrified that again, she would tell me I was crazy and there was nothing wrong with me. Instead- she sat down and listened to me. She took a very accurate history of everything that had gone on in the past few years and made the decision to run a few tests that had I had never been tests for. I specifically remember her saying,
“I am testing you for one specific disease called NMO, but I don’t want you to go home and google it. 99.9% of the time, this comes back negative. I have never seen a position one. But I feel like since you have a history of optic neuritis, I need to do my due diligence and test for it anyway.”
So… that’s what we did. Miraculously I went home and did not google NMO (I know…. Insert SHOCK face here!) This particular test took more than a month to come back, and I had a follow up scheduled for 2 months from that day.
On my return visit, I remember sitting in the car before going into the building and telling my mom…
“I don’t even know why we are here. She is just going to tell me nothing is wrong again, and it’s all a fluke.”
My mom kind of agreed with me, but we went in the building anyway. My first inclination that this appointment may be different than expected was when a medical student came in first. She requested to do an entire evaluation before my physician came in to evaluate me. I looked at my mom, and we were both extremely confused, but allowed her to do so.
The MD came in a little while later, and she sat down. She looked me straight in the eye…. And the she said
“You know that thing I told you not to google…… well you can probably go home and google it now, because yours came back positive”
My world just started spinning, and I’m not even sure what she said after that. I didn’t know what to say, what to ask, or what to think. I did second guess her and say….
“Are you sure?”
To which continued on to say….
“Not only was the test positive, but it was one of the highest positives that has been seen to date in this disease, and it was ran twice”.
I was in total shock. I had an answer to all my problems! Everything was starting to make sense now, until she continued on to say…..
The average life expectancy for a person who is not on preventative medications is 5 years….
At that point- my world stopped spinning, and just turned black. Was she saying I only had 5 years to live? I was only 23 years old! She was saying I was going to die in 5 years! How in the world could this happen?
At that point, we planned to see a specialist to get some information on different treatment options. The treatment options for this disease, are very extraneous. There are very little options, and all of them could have some serious side effects. Since my NMO titer had been SO high, she wanted to start me on treatment ASAP. At that point, I was started on an IV monoclonal antibody/chemotherapeutic type medication, and I have been on it ever since.
The purpose of the medication, is to help keep the disease at bay. To hopefully keep relapses down to a minimum. There is NO cure for the disease.
The first three-four years of my disease were a blur, I had relapse after relapse and was in the hospital much more than I wanted to be. These relapses consisted of optic neuritis, where I have had some intense pain and loss of vision. To this day, without my glasses I am legally blind. Even with my glasses, my vision is less than impressive. My drivers license was taken away for a couple of years due to this as well.
It was only through the quick work of my physician and the GREAT Physician– that I was able to regain some of my vision back with each relapse. I have also had one relapse of transverse myelitis (lesions on the spinal cord). This caused a neurogenic bladder and paralysis. It was only through God’s grace and some intense therapy, that I was able to gain back some of my function in both areas.
With each relapse, I have had IV steroids and plasmapheresis, which is where they filter all of the plasma out of your blood and replace it with artificial plasma in hopes that the relapse would subside, and in most cases it did…. Only through the power of the GREAT physician!
You see…. No matter what you may be going through…. No matter who around you, or what your situation is…. God is always going to carry you through it. According to statistics, I should have been dead at least a year ago…. But I’m not. God is NOT done with me yet. He has great plans for me. He has great plans for my family. He is NOT DONE WITH ME YET! And that my friends…. Is reason enough to get up every morning and keep going!
God continues to work in amazing ways throughout our adoption process. My story above, may not seem to have anything to do with our adoption… but it does. You see… we through all of our fertility treatments knowing- that I had this orphan disease. We so desperately wanted a baby, that we were willing to sacrifice my health to do so. We were willing to do whatever was possible to make that happen.
Probably my biggest wake up call to all of these fertility treatments was a couple of months before we decided to call it quits. I had had some vision problems, and went to my ophthalmologist. At that appointment, I found out that my vision was not only worse than it was before, but it was 3 times worse! We thought that I was in another relapse, and all the usual tests were completed. However, everything came back normal. After more research and testing, we found out that the reason behind my vision loss was from the fertility medications I had been on for quite some time….. see I was making myself worse. My desperation, was causing havoc on a part of my body that I already didn’t have very much control over….. that is where God really started to work on my heart. ❤
NEVER give up…… ALWAYS know that God is on YOUR side…. and Remember that there are some BIG plans in store for your life… you just have to wait and see 🙂