Helping support Steph's rare ear condition-SCDS

Hello all, I am not only creating this to ask for any kind of financial help but also in hopes of bringing some awareness to this debilitating syndrome. My girlfriend Stephanie Schmitz is diagnosed with not only a rare but also nearly unheard of ear condition which unfortunately consumes her life. Please bear with me as this will be a lot of information, but it is also intended to give some perspective about her day to day life to her family, friends and anyone else who loves and cares about her.

Steph was diagnosed with SCDS (Superior Canal Dehiscence Syndrome), a rare ear condition, in early 2021. What this means is there is a dehiscence (thinning or missing bone structure) in her ear canal. Most people with this condition have it in their Superior ear canal. To make Steph's condition more complicating she has it in an uncommon location/canal, her Posterior Canal. This makes matters much more risky, complicating and even more rare than what SCDS already is. She does experience symptoms in both ears although her right ear is much more sensitive. This condition causes extreme dizziness, sensitivity to sound, sound induced dizziness, brain fog, fatigue, hearing her eyes blink, her muscles creak, ringing of her ears, and quite literally being immobile. This is an invisible disease to others so most are not aware of her struggles since it is not physically seen unless you're by her side daily. This is also a condition that progressively gets worse as time goes on which I have seen first hand over the last year. Her symptoms in her left ear may be manageable for now, but we can't predict what they will be in another year. There are no medications or treatments or literally anything to alleviate the symptoms. The only option is surgery. With there not being enough professional experience and knowledge on this particular condition, surgery is a very difficult thing to wrap her head around. And rightfully so, It's hard for her to not feel like an experiment or trial for the surgeon. Surgery is also not always a "guarenteed fix". Some symptoms may get better and some may become more manageable, but there's also a huge risk factor of becoming worse (going deaf or becoming disabled). As you can imagine the recovery time is also lengthy and not pleasant being anywhere from 8-12 weeks or longer. Which is a long time to be out of work and needing proper care. Our ears are what control our balance so more than likely physical therapy would also be to follow. It is a very tedious and meticulous operation, so it is her only hope and wishes to eventually be able to pursue surgery with some of the nation's top doctors that have even the smallest amount of experience handling it.

This condition takes an incredible toll on every aspect of Steph's life; being a mom, her job, her hobbies, her interests, her sleep, her exercise, our relationship, family gatherings, large events, and not to mention her mental, emotional and physical well-being. With such a huge roll it plays in her current life, it's very hard for her to not feel defeated and helpless. Of all these things, in my opinion the hardest for her is being a mom. Stephanie is the mother of Jaxon, a 9 year old boy with lots of energy and love. They have the deepest love for each other and she would do anything in the world for him. Although Jaxon is understanding of her situation, the limitations take an enormous toll on what she's capable to do with him. The majority of the time these are the most simple and smallest things that we reluctantly have to tell Jaxon we cannot do because of Steph's health. Things that most people(as a parent or not) could not even imagine not being capable of and would take for granted. Things like: playing a board game, going for a walk, going for a bike ride, taking him to the park, an arcade, waterpark, skatepark or out to eat. It breaks my heart that she has shared with me many times that even her own son's laugh can trigger her health to flare up or cause her to cringe. This results in her to feel guilt and as if she's a burden cause she can't live up to being a "fun mom or family". At her worst there have been several evenings or nights or weeks that we have had to find alternative care for Jaxon because we know it will have an impact on her health. It hurts my heart so incredibly much knowing and seeing how much that affects her mental and emotional health.

Another one of the biggest challenges we face is not knowing the outcomes of these activities. The side affects and symptoms are not immediate, there are no red flags telling her to stop. But we know it will most likely take effect on her hours later or the following day(s). This prevents us from making plans as she's afraid she will feel too ill and not be able to follow through, letting those individuals down. Her and I both take precautions, although it is not always effective, predictable or in our control. We are careful not to handle things loudly, she wears ear plugs or even construction grade headphones, we avoid loud activities or limit our time at gatherings. And although she wears the different hearing protection often times that is not even enough to dull the sounds down. Even attending church on Sundays which is one of our favorite things to do as a couple is nearly impossible or not logical because we know it'll hurt her. Seeing these struggles kills me as I know she just wants to live up to her potential and not feel like a burden. At times, I can imagine that I feel just as defeated and helpless as she does.

The biggest struggle with getting the proper care is that a lot of the top doctors that specialize in this rare condition are out of our state, Minnesota. So therefore they are out of network in regards to insurance. Obviously traveling to a whole different state for a risky surgery is not ideal in most people's eyes but it is absolutely necessary to us with all the background knowledge we have. They are more experienced, more knowledgeable and even have more advanced equipment for testing purposes. For example, toward the end of May 2022, just to have a Virtual call with a doctor at UCLA in California Steph had to pay around $900 out of pocket. That was just for a second opinion and his thoughts on her condition, surgery, recovery time, etc. Insurance will not cover travel costs(flying would be out of the question as the pressure changes would take a huge toll on her ears and health), hotel costs, hospital stay costs, downtime for recovery, or even the surgery itself. Looking into paying more for other health insurance options is a possibility to help with costs but there are still so many things to take into consideration. Either way, It is not feasible and absolutely unfair to be at this dead end. These are the things that any monetary help would be used for: Travel costs, appointments, surgery, recovery time, physical therapy, alternative health insurance, etc.

Steph is the most beautiful, loving and caring person I have ever met and I love her dearly. She has the strength of a lion and will face any problem with her head high and continue to persevere, but this has knocked her down. In the summer of 2021, she battled thyroid cancer and came out of it extremely fortunate. For her to say "I would go through that a hundred times over again instead of deal with this" hits me hard. She does not deserve this struggle one bit. She has helped me through many of my life struggles and I am FOREVER grateful for that and will do anything I can to help her. Please share this page, let it reach as many people as possible and say a prayer for Stephanie and our family. Thank you for any help, prayers, words of encouragement and taking the time to read this.

-With lots of love,
Buddy (Lee) Anderson
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Organizer

Lee Anderson 
Organizer
Maple Grove, MN