Specialty POTS Treatment for Maria Ostendorf

Maria is a loving wife and mother of five who has been battling dysautonomia, chronic pain, and POTS for over a decade. However, after the birth of her youngest, it has progressively and aggressively gotten worse. On her good days, she can leave the house in a wheelchair, but on the day-to-day, she cannot even pick up her youngest since that could spark another emergency room visit.

Dysautonomia is a dysfunction of the autonomic nervous system. The autonomic nervous system controls the automatic responses of the body (the functions of the body that no one needs to think about) – breathing, heart rate, blood pressure, digestion, organ function, temperature control and the release of hormones, for example. In dysautonomia, the autonomic nervous system is no longer working correctly, and these functions are no longer properly controlled. POTS is a very rare syndrome tied to dysautonomia that is still being studied, in which the nervous system doesn't manage blood flow correctly. Maria has an even more rare form of this rare disease called Hyperadrenergic POTS, or hyperPOTS as some in the community say for short. HyperPOTS is often chronic and progressive, and in many cases like Maria's, it comes with a dizzying and debilitating set of symptoms daily which prevent her from living life in the way most take for granted, including: frequent migraine, fatigue, palpitations, dizziness or vertigo, extreme gastrointestinal upset, pain, and dysfunction, among many others. Her symptoms prevent her from even undertaking even the simplest of daily activities.

The good news? After several years of emergency room visits, countless one on ones with doctors, and hundreds of tests, Maria has finally been able to find and be accepted for a specialty treatment program for chronic pain and complex medical cases including dysautonomia and POTS. It consists of a 2-6 week inpatient Pain Treatment Program at Johns Hopkins Hospital. The program is internationally renowned, with an exceptional success rate, especially as almost everything else that has been tried has barely helped. Patients leaving this treatment have near complete recovery. John Hopkins has almost a 100% success rate with patients from this special treatment program. Maria has been told that she may even be able to play soccer again--something she's been dying to do with her children--not to mention cook, drive, or even just enjoy a leisurely walk.

Maria has been on the waitlist for this speciality treatment program for several months now and just received news this week that one bed has become available, and she can be admitted to the program this Friday.

The bad news:

As this is a very niche disease and specialty treatment program the Hospital is requiring all the costs not covered by insurances to be paid up front before they will accept Maria into the program. The costs after insurance totals slightly over $5000 dollars. And then they have follow up treatments she will have to go to after completing the program to ensure it's effective and monitor her progress. This is unfortunately an insurmountable obstacle as the many years being in and out of hospitals has taken its toll on finances. Needless to say, we are aiming to raise $15,000 for the urgent admission of Maria, the child care during this process, and the follow up treatments.

All funds donated will be used to pay for all the medical expenses associated with this treatment program and thank each and everyone of you for your generosity and support.