Josie's Health Journey
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Josie Reitzel Boyd was diagnosed with a super rare autoimmune disease called Wegener’s Granulomatosis/Granulomatosis with polyangiitis in January of 2015. On that day her life stopped and turned completely upside down. With this disease, came an even more rare symptom of tracheal stenosis, only affecting 10% of those patients, - her airway was growing shut. Wegener's Granulomatosis used to be a death sentence after only 5 months in the 1970s, then in the 90s it upped to 9 years, now one can live a normal length of a lifespan, IF they follow a certain guided regime of specific meds. And, even then many die every month from this terrible disease.
As a single mother of two young children and just having overcome a house fire, her life became even more of a challenge, having to travel across the country to Boston, Mass, to receive chemotherapy infusions and to have surgery on her trachea several times, one time in which they almost lost her on the table. After a few years, her beloved doctor moved to Californian to pursue a career teaching at university and Josie was faced with finding a new specialist, that her insurance covered and also treated her rare disease. She found him in Kansas City, Kansas. She continues to travel here several times a year, sometimes several times a month as she strives to heal and live the life she know she was intended to live.
Josie married the love of her life, “Bear” in October 2018, and he has been her rock this past year. Thankfully so, considering the challenges that they were about to face.
This past 6 months have been challenging as new symptoms have arose, which have caused severe pain and mental anguish, after seeing specialist after specialist, she was referred to the Mayo Clinic in Florida where the doctor there determined she was being faced with yet another even more rare disease -Behcet’s Disease. The symptoms are grave and he could not tell her for sure if it was indeed that but he wanted to be sure to treat her for it, just incase.. A scary prospect, considering the highly toxic medicine she was to undertake. Fast forward 2 months and she was in so much pain that she sought out another local doctor to see if there was anything more that maybe someone was missing. And WOW was there ever! It has been determined that she is 1 of only 7 IN THE WORLD that is having Behcet-like symptoms being caused by the very chemotherapy that is keeping her alive, is now causing LIFE THREATENING Pyoderma Gangrenosum. She now has to discontinue the chemo, blindly in faith, as she awaits for her insurance to approve immunoglobulin infusions. She is scared and her future is uncertain, but one thing she does know for sure is that God will see her through and she still finds the positives in life, everyday!
Just this week, Josie was referred back to Boston to see a specialist to help manage her Pyoderma Gangrenosum. To make matters even worse, she will still need to continue to travel to Kansas to treat her trachea.
Josie used to teach painting night classes before her diagnosis and is now starting them back up again. She will be holding them in the Montpelier Library starting Dec 3. She also has numerous prints of her paintings, as well as originals, and some photography for sale. All of the money earned will go to help pay for her medical expenses. You can see her work on facebook under “Josie’s Journey”.
Please continue to Keep Josie and her family in your prayers.
As a single mother of two young children and just having overcome a house fire, her life became even more of a challenge, having to travel across the country to Boston, Mass, to receive chemotherapy infusions and to have surgery on her trachea several times, one time in which they almost lost her on the table. After a few years, her beloved doctor moved to Californian to pursue a career teaching at university and Josie was faced with finding a new specialist, that her insurance covered and also treated her rare disease. She found him in Kansas City, Kansas. She continues to travel here several times a year, sometimes several times a month as she strives to heal and live the life she know she was intended to live.
Josie married the love of her life, “Bear” in October 2018, and he has been her rock this past year. Thankfully so, considering the challenges that they were about to face.
This past 6 months have been challenging as new symptoms have arose, which have caused severe pain and mental anguish, after seeing specialist after specialist, she was referred to the Mayo Clinic in Florida where the doctor there determined she was being faced with yet another even more rare disease -Behcet’s Disease. The symptoms are grave and he could not tell her for sure if it was indeed that but he wanted to be sure to treat her for it, just incase.. A scary prospect, considering the highly toxic medicine she was to undertake. Fast forward 2 months and she was in so much pain that she sought out another local doctor to see if there was anything more that maybe someone was missing. And WOW was there ever! It has been determined that she is 1 of only 7 IN THE WORLD that is having Behcet-like symptoms being caused by the very chemotherapy that is keeping her alive, is now causing LIFE THREATENING Pyoderma Gangrenosum. She now has to discontinue the chemo, blindly in faith, as she awaits for her insurance to approve immunoglobulin infusions. She is scared and her future is uncertain, but one thing she does know for sure is that God will see her through and she still finds the positives in life, everyday!
Just this week, Josie was referred back to Boston to see a specialist to help manage her Pyoderma Gangrenosum. To make matters even worse, she will still need to continue to travel to Kansas to treat her trachea.
Josie used to teach painting night classes before her diagnosis and is now starting them back up again. She will be holding them in the Montpelier Library starting Dec 3. She also has numerous prints of her paintings, as well as originals, and some photography for sale. All of the money earned will go to help pay for her medical expenses. You can see her work on facebook under “Josie’s Journey”.
Please continue to Keep Josie and her family in your prayers.
Organizer
Josie Boyd
Organizer
Edon, OH
