My friend, Maika, has been living with a rare, undiagnosed autoimmune disease for the last 10+ years. She is 29 years old with an outstanding positive attitude towards life. She is a kind, loving person who suffers, usually in silence, daily from severe pain. In the last 6 months, her illness has crippled her lifestyle. It has intensified to the extent she can barely move which makes it very difficult to leave her bed at all much less go to work and complete her final three classes to earn her Bachelor’s degree. Because of this, she will lose her medical insurance by the end of the month. She requires weekly infusions in conjunction to a high dose of methotrexate where insurance only covers a small amount. The treatment plan leaves her extremely nauseous and dizzy on a daily basis in addition to the pain from her enflamed rib. Her doctor has indicated this is not a guarantee but has the most research supporting positive results. Please help Maika by donating to her medical costs. She has so much more of life to live and give to the world.
In November 2014, Maika’s health significantly declined. Test results showed she was extremely iron deficient. She began iron infusions with horrific results. Not only did the infusions not improve the situation, they actually leached more iron from Maika. This affected the autoimmune disease by causing her rib to enflame. A standard “flare” consists of the bone tissue to increase to double in size, additional swelling in the thoracic area, swelling in the esophagus, and severe migraines. These flares started coming continually instead of the predictable 5 weeks break from the previous 10 years. She no longer is able to recover from a flare before it returns; this has been continual since January 2015. Flares are unpredictable; they can come as quickly as they go. I have personally witnessed the rib bone increasing to double in size and back to normal within 15 minutes. This pattern continued for over 2 hours; this is very taxing on her body. This has impacted her life to where she can barely work, finish her education and have any meaningful quality of life.
In 2005, while being treated for a simple sinus infection Maika’s immune system began attacking her body. Starting with a very rare instance of esophageal candidiasis, she started presenting very unusual swelling of the bone tissue on her bottom left rib causing extreme pain. Doctors were unable to identify what was happening and she began a battery of testing. At this point she was hospitalized due to the severe pain of her rib and dehydration. While in the hospital, the rib bone was biopsied, a full bone scan completed, MRI and CT scans, not to mention many vials of blood for testing. All tests never presented a definitive result for a diagnosis. During her hospital stay, her case was presented to a well-known and respected rheumatologist which resulted in her requesting Maika as her patient. This rheumatologist has been documenting her case for the last 10 years.
Over the last 10 years, Maika has been hospitalized multiple times, two of which were emergency ambulance transports. Unfortunately since there is no specific diagnosis, visits to ER can only manage her pain and rehydrate her. Since the hospital staff are unable to understand the finer points of Maika’s case, this results in them ordering multiple tests, which have already been done previously, to try to understand the issue. With the last ER visit, Maika was fortunate to have an understanding nurse, PA and doctor to facilitate her visit while eliminating the some costs. They were able to get Maika’s pain level from a 12 to a 7. She entered the ER with a pain level of 10 but with the necessity of the doctor to complete a physical exam of the rib it ended up causing more pain and gave no answers.
On a normal day, Maika’s tolerable pain is around a 4; very rarely does it reduce to a 1 or a 2 and never a zero. She has lived this continual persistent pain every single day of her life for over the last 1o years. As for the last 6 months, Maika’s new normal is an average 6 pain level; this has resulted in her being able to work around 10 hours a week. Most of the time it is extremely difficult for Maika to walk or even stand on her own; there are times when the pain becomes so intense crawling is the only way for her to move. The best way to tolerate the pain is floating in water; this does not alleviate the pain but does allow her to be weightless for a time taking some pressure off her enflamed rib.
In all of this time, many treatments have been tried to no avail, not even leading to a possible diagnosis. As her health issues have progressed she has had a liver biopsy due to test results presenting high liver counts. She also is being treated for polycystic kidney disease in which she is one of the 1% of the population who actually feels the pain from multiple cysts formed on her kidneys. Due to the location, only some cysts can be drained to reduce pain whereas the others would require removal of the whole kidney. Maika has become extremely iron deficient due to the polycystic kidney disorder. Unfortunately her body is unable to withstand iron infusions.
Another seasoned rheumatologist was brought in to consult on her case. After reviewing her considerably large patient file, it was suggested a very rare variant of a very rare autoimmune disorder known as SAPHO Syndrome may possibly be her diagnosis. This is not a confirmed diagnosis as she only presents on 3 out of the 5 indicators of SAPHO (Synovitis, Hypertosis, and Osteitis). The recommended treatment plan is extreme and taxing on her already battered body. Any donation towards Maika’s medical fund will help alleviate the additional stress. She has lost a decade of the prime of her life to this disease. She is so vivacious with a wonderlust of life. Please help her so she can beat this disease into remission so she can realize her dreams to become a historian and be able to visit to the locations she researches.
Learn more about SAPHO Syndrome: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340847/
- Jose Escobar Rodriguez
- Heidi Cordner