Help Belinda Pay for Hand Reconstruction

Hi, my name is Belinda and I'm 30 years old.

I have a rare genetic disorder called Stickler Syndrome, which causes the collagen in my body to be mutated. Stickler Syndrome is a degenerative disorder, causing my disability to affect almost every part of the body. There is no cure, and no treatment other than managing symptoms as they arise. In the last ten years, my condition has degenerated rapidly. I am now unable to work, due to the chronic debilitating pain and fatigue. All of my joints are hypermobile and dislocate, and are developing osteoarthritis. I am at high risk of going blind from retinal detachment, and have lost a lot of my hearing. My spine and pelvis are declining rapidly and make me unable to stand, sit and walk without excruciating pain, so I use a wheelchair when I leave the house. I have also developed a neurological disorder affecting the autonomic system, called Postural Orthostatic Tachycardia Syndrome (POTS), which was triggered by Stickler's. POTS causes me to faint frequently from very low blood pressure and high heart rate. When I pass out, I tend to do a lot of physical damage, as my joints are so unstable and weak.

In July 2021, I was in the midst of a very bad flare up of POTS. I tried to stop myself from falling by grabbing onto a door. Unfortunately, I wasn't able to stop myself from passing out, and dislocated my left thumb and its metatarsal in the same fashion as "skier's/gamekeeper's thumb". The weight of me falling with my hand on the door hyperextended my thumb with so much force it totally destroyed the joint. I treated it as I would all my joint dislocations, and assumed it would get better in a few weeks. I didn't go to hospital emergency, as Sydney was in lockdown at the time and the hospital system at breaking point. Being medically fragile, I also didn't want to risk coming into contact with Covid while there. I had the thumb and wrist X-rayed, which showed no fracture. After four months of physiotherapy and bracing, my thumb was still in a permanently dislocated position, with no progress in its recovery. The pain in my hand is still intense, and limits almost all movement. The thumb and metatarsal are so unstable they dislocate further as soon as the brace is off, which in turn dislocates other joints. I had an MRI in November, which showed that my Ulnar Collateral Ligament had ruptured and regressed, leaving a Stener Lesion. This essentially means that nothing is holding my thumb and metatarsal together. I have no option other than surgery, which needs to be done as quickly as possible to save the joint. If I leave it much longer, I will have no choice but to have the joint fused.

Comparison between my injured and uninjured hand.

I assumed my private health insurance company, NIB, would cover my surgery, since I have coverage for joint reconstruction. They have rejected my claim, as I didn't seek emergency treatment (which, again, was due to the pandemic) and because the surgery comes under the category of "Bone, Joint and Muscle", rather than "Joint Reconstruction". Despite the surgery being performed is solely to reconstruct the ligament, orthopaedic hand surgery still doesn't qualify on the level of cover I was on. I had previously been told that all joint reconstructions would be covered, so I have been totally blindsided by the ridiculous bureaucracy of this decision. How is a joint reconstruction suddenly not a joint reconstruction just because it's performed on a hand?! Despite my surgeon attempting to intervene, NIB is adamant that I must serve a 12 month waiting period. The waiting period for the public hospital system is currently 9 months, and can't guarantee I'll get a surgeon that understands connective tissue disorders. I have exhausted all my options in arguing with NIB about this claim.

I can't leave the surgery much longer, definitely not 9 or 12 months. It may already be too late to save the joint, but we need to try. Fusing the joint will cause a plethora of other problems - this would mean the bone between my wrist and middle thumb joint will be a permanently immobile, solid bone, which will obviously make my life much harder and cause further arthritis in the other joints of my hand. It's a pretty important joint for doing almost anything with your hands! I'm a wheelchair user, and at present I can't use my hand to push myself, which has been really upsetting.

The surgery will cost at least $6500 to $7000 minimum. I have no choice now but to self fund it through North Shore Private Hospital, in order to get the surgery done in time, with a surgeon who understands my complicated genetic disorder. Due to my disability making it impossible for me to work, we are relying solely on my husband's income, and my Disability Support Pension. My surgery is scheduled for the 12th of January 2022.

I'm devastated by having to ask for financial assistance from the community, but I have no other choice but to ask for help. Please, any small amount you can spare right now will be appreciated. I totally understand that this is a financially difficult time of year, especially with Covid. If you have the means to donate, I gratefully appreciate it.

Yours sincerely,

Belinda