Help Jennifer get SMAS surgery in Germany
1/24 Update: Confirmation from Prof. Sandmann in Germany after receiving my medical records from Hawaii, he is diagnosing me with ALL the vascular compression syndromes: Superior Mesenteric Artery Syndrome (SMAS), Median Arcuate Ligament Syndrome (MALS), Nutcracker Syndrome (NCS), May Thurner Syndrome, and Pelvic Congestion Syndrome. Surgery is urgent and necessary for any chance of recovery.
Aloha from Honolulu, Hawaii! My name is Jennifer and I have been dealing with an exceedingly rare digestive condition called Superior Mesenteric Artery Syndrome (SMAS), as well as just being diagnosed with four other compressions (noted in above update). I was fortunate to be diagnosed after a lifetime of misdiagnosis in 2016, and immediately had a surgery to fix it, but the surgeon here in Hawaii was not knowledgeable in vascular compressions, and did not understand that the surgery she chose was not right for my anatomy, nor the best surgery for SMAS. Since this surgery did not solve my issues, especially the undiagnosed compressions, I have been searching for another surgeon to help me ever since, another surgeon with an understanding of the gastro-vascular issues that are specific to SMAS that could help me gain a better quality of life.
Over the past 10 years I have been dealing with daily bouts of nausea, vomiting, extreme pain whenever I try to eat, frequent trips to the hospital, and at this point, my weight is dangerously low. I am so debilitated that there is rarely a day that I am even able to be out of bed for more than a brief period without being in constant pain. Surgery is the only way to improve my life, as I have seen others like me have surgery and find their lives improve.
I have been in contact with a world-renowned vascular surgeon in Düsseldorf, Germany. He has expressed his thoughts that he can help me through one of his procedures which he has done over the years with excellent results. The only way to know if he can help me would be for me to first travel to Leipzig, Germany to have testing done by his partner, to see if the previous surgery I had could be reversed, and benefit from this second surgery. These two German doctors, Prof. Sandmann and Prof. Scholbach, are very well known and are my best and only hope to regain my health. The health insurance system in Hawaii has made it exceedingly difficult for me to seek medical care outside of the state without paying out-of-pocket, yet I have been denied by every GI doctor in Hawaii because they do not know how to treat SMAS, it’s too rare. Germany truly is my only hope.
The travel, testing, and surgery in Leipzig and Düsseldorf will cost upwards of $50,000. My family can help me with some of these expenses, but I am humbling myself to ask my community to help me raise the funds to make this possible. I have done fundraisers in the past for my charitable project: Malama Makana Care Packages of Aloha, which delivers care packages to chronically ill people who are isolated by their illness in the hospital or at home. My efforts, time, and artistry over the last three years of mailing unique care packages has brought happiness and hope to about fifty children and adults suffering alone. This time, I’m asking for donations for myself, for my travel expenses only. Therefore, my GoFundMe goal is $10,000 - my total travel costs as well as for someone to travel with me (a travel companion is a requirement for post-surgery).
Mahalo nui loa for your care, consideration, and support! Please share this post/link and spread the word! January 28th is officially SMAS Awareness Day and February 28th is Rare Disease Day!
