Appeal to Help Cover Costs of Mast Cell Specialist

New Appeal to Help Cover Costs of Mast Cell Specialist/Second Opinion

Thank you so much to everyone who has donated in the past. Your support has allowed me to continue to seek healthcare and search for treatments that work so that ideally, I can become healthy enough to work again. The funds also have helped with essential transportation and rigorous new testing at Hopkins and Mercy Medical in Baltimore, as well as helped to cover medical and some living expenses as I work on my disability appeal.

I am now seeking to raise additional funds to cover the cost of seeing a mast cell specialist in New York, Dr. Afrin, for a second opinion, and hopefully, a treatment plan that will make a real difference in my quality of life. I have been seeing an immunologist, Dr. Maitland, for about a year now, but I have not seen the progress that I would have hoped. This is a complex disease, and a fresh look could make a real difference. While I have tried to find that second opinion closer to where I live in VA, there are not many highly trained specialists in mast cell disorder and its related diseases. I am still trying to be seen at Johns Hopkins, but their immunological team uses a set of diagnostic criteria that are questioned by some other specialists. This leaves me few options in terms of a second opinion, and all of them are out-of-network doctors with high costs.

Dr. Afrin is highly recommended by a number of other mast cell patients, and I am hoping to see him before the end of this year. He could give me a good shot at recovery because of his acknowledged expertise in mast cell, his accessibility, and his tenacity in seeking treatment solutions. As one patient of his put it, "he figures out things that other doctors don’t, he sends notes to all other specialists, he answers emails from emergency rooms, he also talks to me in person when I call him.”

The cost of seeing Dr. Afrin is significant, including:

• $3,000 for an initial consultation, during which Dr. Afrin conducts a comprehensive review of your health history, old records, prior test results and physical exam in an effort to confirm a diagnosis of mast cell

• $3,000 for an initial Follow-Up, during which Dr. Afrin reviews all current test results to establish a possible diagnosis and treatment plan for mast cell.

• Subsequent follow-ups are 1 hour and $650 each.

• Travel to Purchase, NY, for the initial consultation: ~$700

Some reimbursement for the visit costs may be covered by insurance, but this is likely to be a small sum. Therefore, I'm looking to raise an additional $7,000.

I would be extremely grateful for anything that you are able to contribute. I am hopeful that this investment in my health will get me to where I need to be in order to return to work and begin to recover financially. With thanks and love, Sarah

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Over the past eighteen months or so, Sarah’s health has rapidly deteriorated, completely altering her ability to function on a basic level. She has an immune disorder called Mast Cell Activation Syndrome, as well as a nervous system disorder called Dysautonomia. Sarah needs your support to help cover medical expenses and care as well as to offset living expenses due to loss of income. Thank you for giving what you can and your support during this difficult time.

It’s hard to know where to begin. Sarah’s rapidly worsening health and her chronic illness and pain are not easy to understand. She has not been diagnosed with a disease that most of us are familiar with. Her disability is invisible many days. What you need to know is Sarah’s life, her physical and mental health, have been turned upside down over the past year and a half. She wrote very eloquently about her experience a year ago.

While in Germany, Sarah began experiencing health issues that became more and more acute as time went by. Sarah began to have digestive distress and allergic reactions to foods and products that had never bothered her before. She went to doctor after doctor, but they could not figure out what was going on. One even suggested it was all psychosomatic. The reality is much more complicated. Sarah suffers from a condition called Mast Cell Activation Syndrome, a condition in which the patient experiences repeated severe allergy symptoms affecting several body systems, and additionally, was recently diagnosed with Ehlers-Danlos Syndrome. She also has a nervous system disorder called Dysautonomia, which causes dysfunction of body functions such as internal temperature, breathing patterns, blood pressure, and heart rate. These three disorders frequently occur together.

Mast Cell Activation Syndrome has upended Sarah’s life. It causes allergic reactions to many foods, food additives and other products like medications, soap, laundry detergent, and in Sarah’s case, even some IV fluids like saline. Before this illness, Sarah was an avid exerciser. She loved swimming and hiking and lifting weights, but now she reacts when she does even the mildest activities like walking or housework. These reactions include severe nausea, lightheadedness, and headaches; intense fatigue, chills, and other flu-like symptoms; shortness of breath; hypotension; paresthesia; neuropathy; hives; and digestive distress, among other symptoms. The symptoms are truly debilitating; Sarah has been to the emergency room several times for her allergic reactions. Because of this chronic illness, she can no longer work. As Sarah put it, on a good day, her pain level is at a six out of ten. Most days, it is around an eight.

Sarah has worked relentlessly to find treatment but this is not a well-understood disease. It was only acknowledged as a distinct disorder within the past 15 years. Moreover, Sarah’s condition has been extremely complex. Since a major trigger last fall, she has been reactive to nearly all medication, and the typical treatments have failed. Remission is possible, but she needs advanced medical care that isn’t easily accessed. She has driven to New York to meet with a specialist and is researching meeting another doctor in upstate New York, but between medical expenses and out of network doctors visits where insurance won’t cover the cost, she is hemorrhaging financially. Another cost is medication. Whenever Sarah trials medication, she almost always has to have the medication “compounded.” This means that a specialty pharmacy will make the medication so that it does not contain additives or fillers that Sarah might react to. This can be expensive. Insurance does not cover the full cost of compounded medications, and typically only covers a fraction of it.

Since late February, Sarah had been using a PICC line to take some antihistamines for some symptom relief. This required a nurse to come weekly to provide care. The PICC line was removed at the beginning of June when Sarah developed a blood clot. Now she is struggling to find an oral medication she can tolerate to avoid replacing the PICC, but she has had very limited success.

Physical illness has also put a serious and understandable strain on Sarah’s mental health. She has felt suicidal and struggles daily with severe depression. She attends therapy regularly, a very expensive necessity. Because of her reactivity, she has not found psychotropic medication that she can take normally.

Sarah has applied for disability but was initially denied. As Sarah works with a lawyer to appeal the case and simultaneously try to find medical treatment for her, expenses are piling up. Sarah was very reluctant to ask for help, but she has reached a point where she cannot afford to get the help she needs without more support. The reality is our medical system leaves many chronically ill people like Sarah bankrupt or worse. Thank you for your generosity during this tremendously difficult time.