Hope For Michael's Rare Disease

I have never known my Dad not being sick. Early childhood memories, as joyous as they were, are tainted by a grey cloud that comes with a parent who was simply unable to cope. For years, the diagnosis was chronic fatigue syndrome. Unfortunately, being heavily medicated for pain relief was the prescription and this misunderstanding of deeper health and lifestyle issues led to one problem after another.

My father, especially having to look after 6 children, has spent far too many hours of his life in doctors' offices looking for answers. To finally receive an accurate diagnosis after years of searching provided momentary relief. It's like finding a word to your crossword puzzle. To finally feel like there is an answer. A cure. A treatment plan. But the relief and hope was short lived. You then realize, your focus on finding that word meant you overlooked the fact there is still the whole crossword to finish.

Dercum's disease is a rare autoimmune condition that leaves its sufferer dealing with painfully swollen, fatty tumors in the adipose tissue. These lipomas can only be removed surgically and there's little in the medical literature that provides a long term treatment plan for patients. Symptom management has been the primary way to deal with Dercum's. Causes are unknown and for someone like dad who is neither female nor obese (to whom most cases are seen in), its development has left doctor's baffled.

As time went on, we found ourselves falling into a rabbit hole. A diagnosis only led to more questions, more confusion and a realisation that a treatment plan for Dercum's disease is still in its infancy and to this day, the disease is gravely misunderstood. Years of misleading diagnoses led to ineffective treatments and copious amount of heavy duty medications that have caused a lot of damage to our father's body.

Most days, he rises from bed only to perform the routine daily tasks that keep him fed and clean. These exhaust him and he is quick to return to bed where he falls into sporadic naps, attempting to dull the pain. He has lost mobility in one of his legs. A chronic lower spinal problem is exacerbated by the lipomas that are too numerous to count. To rub ones hand over his side is like the feeling of corrugated iron.

The most painful part is watching the mental deterioration of a parent. He finds it difficult to string words together now. Forming sentences is difficult. You can see the mental strain on his face.

This is something I would not wish on anyone.

As a family we've tried to band together to reduce his stress load. With a daughter who has struggled with Anorexia Nervosa for over 12 years, this is no easy feat. This has provided a whole host of other problems I won't delve into further here. Years of money has been poured into both her and his treatments and medications, leaving little for much else.

We've helped hone in on his diet to eliminate inflammatory foods that can spur an autoimmune response in the body. He has dabbled in many alternative forms of therapy. Some with far greater success than any conventional treatment plan has provided.

Of particular note is Ozone Therapy. The therapy helps oxygenate blood thus helping the body to at least try to heal itself. His shallow painful breathing simply doesn't supply enough oxygen to the body to help heal. The oxygen therapy will also help take away some or all of his pain thus reducing the use of the harmful painkilling drugs that he is forced to take every day.

I traveled to Sydney with him one year to seek this treatment as it's not commonly used in Australia. As part of standard protocol in many European countries and prescribed by even General Practitioners for many medical conditions (in particular spinal stonosis), it was crazy to see how expensive and hard to access it is in Australia. After only one round of treatment, for the first time in as long as I could remember, I saw my Father walk pain-free. We walked up to 5km that day. A small feat for many but for someone who can hardly walk to the bathroom, an enormous leap. Most importantly, it provided a hope for healing we had been praying for.

It's heartbreaking to know the one obstacle that stands in the way of a better life is money.

With this money raised from the gofundme campaign, we hope to provide further ozone therapy from a reputable company called Longevity Resources Inc. We are also interested in buying him a lymphatic compression pump and garment from Mego Afek, which is recommended by Australia's top expert on Lymphedemia to help with the disease. These are the incurable fatty lump deposits that progressively accumulate over time and so its vitally important we address them now to inhibit their ability to increase and spread.

Every dollar counts and we're reaching out to the public in a last hope to help Dad get back on his feet. He has spent his life unselfishly in service of people in and out of the Church as a Lutheran minister. His greatest delight has always been those outside the Church who would often tell him things they were yet to tell their therapists. We've seen the passion in his eyes and his smile when he has had any of those encounters. We would love that for him and those he gives joy to for many more years yet.

Thank you for your generosity and blessings.

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Organizer

Joshua Uebergang 
Organizer
North Tivoli QLD
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