Some good news on a Monday - Update from Utah Jen

Jen asked me to post this update.

Hi everyone and good morning, 

I'm just updating everyone on Ben. We had his last orthopedic appointment two weeks ago and he is all healed up from the surgery and doing wonderfully. We are so happy with the outcome. He is walking like normal, able to do everything again. He actually went camping and hiking last week. 

He had a rheumatology appointment on Thursday and we could not have received better news than we did. His rheumatologist looked at the x-rays of his spine and neck. Most AS patients have what they call a bamboo spine. She sees nothing forming in his spine or neck and the x-rays looked beautiful. It appears the AS was only was affecting his hips and with the full hip replacement on both hips he has now been told his AS is in remission! He no longer has to take Humira (for the time being, she reserves the right to change her mind at a later date if needed) and all other drugs he was having to also take, he no longer needs to! We cannot believe his is in REMISSION!!! The doctor has asked to study Ben as it seems there are a group of young men where AS is only affecting the hip region and once they have the hip replacement surgery, they seem to go into remission. Of course, we agreed to allow them to study his progress. They took 4 vials of blood and gave him a questionnaire to answer. We felt we needed to allow this to help future generations along the way with medical progress. They will continue to study his progress at every appointment.

 He has also been cleared to go back to work and this week he will be back full time at Red Iguana! 

 It's been a long 14 months. Lots of pain and sadness but the outcome of all we have endured for the time is just the best news our family has had in a long time. 

 We would like to thank everyone from the bottom of our hearts for all the love and support we have received to get this point! It takes a village and you were our village!!! 

We cannot thank you all enough. There are just no words to even describe the love we have for all of you!!! Thank you again and we love you all! More than words can tell! 

 Love, Ben and Jen

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The original thread with the story and Go Fund Me link  The turnaround on the AS part is miraculous. https://vivalazone.org/other-stuff/hey-zoner-family-utah-jen

"Ben has Ankylosing Spondylitis (AS). AS is an autoimmune disease that primarily affects the spine. Inflammation of the vertebrae and other joints causes severe, chronic pain. If unchecked, the vertebrae fuse over time. The disease is related to arthritis—very painful—but strikes most of its victims in young adulthood. Little is known about its causes, except that it’s genetic.

AS has confused Ben’s body. The cartilage in his hips is gone, bone scraping on bone. He can get around only with a cane, and with difficulty. Hiking and backpacking in his beloved Wasatch Mountains is no longer an easy drive away. Pain and fatigue are constant companions. Work, too, is out of his reach.

There is no cure.

But the symptoms can be treated. Ben’s medical team is optimistic that bilateral hip surgery will give him the use of his hips again, allowing him to walk, and work, though his options will be limited by his mobility."

Obviously AS messed with 'da wrong boy and family. GRATEFUL indeed!