Help Jeff Kruse Battle A Rare Autoimmune Disease

Thank you very much for taking the time to read this. For those of you who do not know me, you likely know my husband Jeff as he's a pretty unforgettable and wonderful guy! For Jeff's birthday this year, I am reaching out for help with medical/dental care that is not covered by insurance.

Jeff was diagnosed in 2019 with a rare autoimmune disease called Granulomatosis with Polyangiitis (GPA), also known as Wegener's GPA.

To say the past two years have been painful and difficult for Jeff is the understatement of a lifetime. After what was initially misdiagnosed as sinusitis and a "spider bite", Jeff has finally received a diagnosis and has been in treatment that is slowing the progression of some parts of the disease. I'll give you a brief description of what this horrible disease does and I've included a lengthier description below:

Granulomatosis with polyangiitis (GPA), previously known as Wegener's granulomatosis, is a rare disease. It is a type of vasculitis, or inflammation of the blood vessels. The inflammation limits the flow of blood to important organs, causing damage.

Over the past 6 years, Jeff has had the following happen, due to the disease eating away at his body:

At this point, due to GPA, Jeff has to have ALL of his remaining teeth extracted and is faced with getting replacement implants, almost completely out of pocket. GPA has caused Jeff's teeth to die from the inside out. Jeff has been religious and diligent about his oral health care routine and has been told by multiple dentists in the past that his mouth was perfectly clean. It was only once he was diagnosed that we began to understand why his teeth were dying and literally falling out while he wasn't even eating, drinking, chewing, etc. He's spent countless (probably around 60) hours on the phone with insurance , both medical and dental, to get coverage. Because it's dental related he can't get the coverage he needs to pay for full upper and lower arch replacements. If he were to be hit in the face with a baseball bat, or fall and lose his teeth, then insurance would cover it. But because insurance is a nightmare, he's been denied coverage for replacement at least 6 times. He's tried multiple oral surgeons, prosthodontists, and dental specialists but none has enough experience to get the coverage for him.

At this point, all Jeff wants is to be able to eat food somewhat normally again. This can be achieved through dental implants. His doctor has advised against dentures because the tissue in his mouth with be forever changing size due to GPA. He won't be able to keep dentures in his mouth.

We have decent insurance and have been fortunate enough to get decent coverage for the major things like surgery and most of his medication. He's on steroids and immunosuppressants and has been through 6 rounds of chemo so far we are hoping to have him in remission soon. All of the copays, coinsurance, travel, time off, etc. add up.

Jeff has shown amazing strength, positivity, and the utmost determination through all of this. He doesn't complain (even when he should!!) and keeps moving forward. He maintains his glass-half-full attitude despite the physical pain and the mental toll this has taken on him. He's tried everything to get this coverage, exhausted all of our financial avenues, and fought harder than anyone I've ever seen to do this on his own. He's a warrior and this disease SUCKS! If there were any other way to accomplish this, he'd have found it by now.

So I'm putting this out here to see if anyone would like to donate a little bit to help get Jeff some new teeth!

Thank you again for taking the time to read this and thank you for considering a donation, no matter how small.

With the utmost gratitude,

Ashley Kruse

More about GPA (in case you need a nap or something painful to read ;)

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Granulomatosis with Polyangiitis (GPA/Wegener’s) is systemic, meaning that the effect of inflammation can be present in the entire body. It affects the upper (sinuses and nose), and lower (lungs), respiratory system and frequently involves the kidneys, lungs, eyes, ears, throat, skin and other body organs. For unclear reasons, blood vessels in affected areas may become inflamed, and clusters of certain cells (granulomas) may occur. Patients who do not have involvement of the kidney, brain or gut are said to have Limited GPA. However, using the term “limited” has become unpopular because certain forms of the illness may still be very serious even though these other organs are not involved.

As awareness of GPA/Wegener’s grows, more patients are diagnosed in the early stages of the disease when effective treatment can result in early remission and prevent organ failure. The onset of GPA/Wegener’s may be slowing moving with few symptoms, or rapid and severe.

About 90% of patients have symptoms of a ‘cold,’ ‘runny nose’ or sinusitis that fail to respond to the usual therapeutic measures and last considerably longer than normal upper respiratory tract infections.

Not all patients with GPA/Wegener’s experience all symptoms.

• arthritic joint pain

• blood in urine (which may or may not be indicated by a change in urine color)

• cough (with or without the presence of blood)

• fever

• inflammation of the ear with hearing problems

• inflammation of the eye with vision problems

• lack of energy

• loss of appetite

• nasal membrane ulcerations and crusting

• night sweats

• numbness of limbs

• pleuritis (inflammation of the lining of the lung)

• rash and/or skin sores

• saddle-nose deformity

• weakness, fatigue, exhausted

• Weight loss or weight gain.

Granulomatosis with polyangiitis (Wegener's) - GPA - is serious but treatable. To prevent complications, prompt diagnosis and treatment are essential.

The cause of GPA is unknown.

GPA often affects the sinuses, lungs, and kidneys. It can lead to kidney failure if not treated.

Recurrences of disease is common.