My name is Holly and I was recently diagnosed with a rare disease called sarcoidosis. While sarcoidosis is already rare, I have extrapulmonary sarcoidosis without any lung involvement, which is extremely rare, occurring in only 5% of people with sarcoidosis.

My story starts with a visit to the Community Blood Bank to donate blood, which is something I do every 8 weeks. However, starting in Jan 2025, I suddenly had 3 visits in a row where I could not donate, due to my hematocrit being too low. At that point, the staff at the blood bank recommended I let my doctor know about it. I was going to blow it off, thinking it was just from always donating blood, plus I work in healthcare, so I thought I knew best, but thinking about how my paternal grandfather died of leukemia and my dad died at 59yo of aggressive metastatic prostate cancer, I ended up changing my mind and I sent my doctor a message. From there, they ordered a CBC Diff, which came back abnormal, showing pancytopenia. At this point, more bloodwork was ordered, which also came back abnormal, including low reticulocytes. My PCP thought I could have a blood cancer and I was referred to oncology/hematology for further workup.

Over the next couple of months, I started to experience low back pain, complete numbness of my right leg, right groin and hip pain, and stomach issues. I also lost 40+ pounds within 3.5 months, without trying. Not only was I referred to oncology/hematology, but I was also referred to pulmonology, ENT, neurology, rheumatology, ophthalmology, urology, sports medicine, orthopedics, physical therapy, and gastroenterology.

With almost every doctor concerned I had some type of cancer, I spent the next several months in a constant state of anxiety. Over time I found out that, even though my symptoms all started around the exact same time, many of them were unrelated.

After many trips to many different specialists, a gazillion tests, including a PET scan that showed many enlarged lymph nodes with concerning high metabolic activity, 5 different MRIs, 4 CT scans, 2 EMG's, a PFT, so many trips to the lab for bloodwork, a 6.5-hour iron infusion, a colonoscopy, upper endoscopy, a few surgeries including a bronchoscopy with lymph node biopsy and another trip to Pittsburgh for a neck dissection, and many months with doctors concerned I have lymphoma, I found out I have sarcoid, as well as pancytopenia, iron deficiency anemia, bladder distention, urinary retention, OAB, spinal stenosis with pinched nerves in my low back, Type 1 Modic change in my cervical spine bone marrow, femoroacetabular impingement of my right hip, significant cam deformities of both hips, IT band syndrome on the right, a torn labrum muscle in my right hip, which will also be requiring surgery, severe gastroparesis, and several other new diagnoses.

I am currently scheduled to see a sarcoid specialist in Pittsburgh in the coming weeks and just found out today that I will also need to have a bone marrow biopsy next week, because they still can't figure out why my white blood cell counts are consistently low, so there is still concern for something worse underlying the sarcoidosis.

I am typically not one to reach out to the community for help, but the medical bills have become unmanageable at this point and the amount of work I have had to miss for doctor appointments and procedures, on top of the travel costs going back and forth to Pittsburgh, is adding up.

I would like to be able to go to the Cleveland Clinic Foundations Sarcoid Clinic, which my doctor recommended, but they are not covered under the enhanced level of my health insurance, so the first visit alone will cost me over $1,000.00.

On top of all of this, my orthopedic surgeon will not do my right hip surgery until the systemic issues are resolved, which means I have had to have right hip injections and will be doing physical therapy weekly, which is also extremely costly.

Any donations will go to pay off my medical debt and fund my continued treatment.

Thank you very much for taking the time to read my story.

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