Welcome to my medical fundraising page.
I have Ehlers-Danlos Syndrome (EDS) and Cranio-cervical Instability (CCI) and intense chronic pain 24/7. Treatment for CCI is not covered by my insurance. I am trying to raise money for treatment for CCI and Chronic Pain by EDS knowledgeable practitioners.
I have a passion for disability advocacy and I help run the Des Moines Iowa Ehlers Danlos support group. My faith in Jesus Christ is very important to me and I am active in my local church, Frontier Church. I have part time roles at both UnityPoint hospitals as a Unit Secretary and the Des Moines Public Schools as a Substitute Teacher. My ability to work is greatly impacted by my pain, fatigue and spine instability.
Updates (6)
April 30, 2025
Update from NYC trip.
Two weeks ago I was in NYC to see Dr Bolognese and his team and have some neurological tests. These tests involved a small surgery. This visit was very beneficial and yielded lots of answers and some new diagnosises, best yet, we have a plan for moving forward.
Many of my neurological symptoms I have had for years I finally have an explanation for!!! This is so exciting and validating.
In summary, I have an unstable cervical spine both in the vertical and horizontal directions, both my jugular veins in my neck are being compressed, this compression is causing intracranial hypertension when I'm lying down (basically the csf fluid is causing too much pressure), and there is a tiny leak of CSF somewhere (still got to investigate exactly where) that is causing intracranial hypotension when I'm upright (too low of pressure), my spinal cord is tethered, among with some other findings.
The plan is to have surgery to fuse my upper cervical spine and to decompress the jugular vein on June 4th. I will need to be in NYC about 3 weeks total with the recovery process. Although insurance is paying for most of the surgery I still have costs of hotel in nyc, as well as airfare for myself and various friends to stay with me and help me. I also have not been able to work even part time since Jan due to increased pain and fatigue.
I appreciate your prayers and support. Thanks,
Marie Christian
Would you please pray for me?
October 23, 2024
So it has been sometime since I posted an update. The spine surgery was put on hold and waiting on hearing back from DR Bolognese in NYC. However while I was waiting I had the hernia repair surgery up at Mayo last week. I am still up at Mayo but will be discharged soon possibly as early as tomorrow. I am in pain but so far it looks like the surgery did its job. Insurance wise they will be paying for this surgery up at Mayo 100% and so I will have minimal cost with the three nights at hotel in the area for the pre appointments.
Photo Galleries (2)
Guestbook
June 3, 2025
We are praying for you, Marie and wishing you a quick recovery!
Kent and Sheila` Young
January 28, 2025
I saw your post on fear of being a burden. Please never confuse weary with worth. Your worth comes from your eternal never changing Creator God, while weary and worry come from fallible sinful man. Praise God from whom all blessings flow!
A Friend in Christ Jesus
July 5, 2024
Friends will get you to your goal! Hang in there!
Jennifer Kittleson
