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Grand Rapids, MI

We are rare, undiagnosed, and orphaned

Embarking Blog

...on the journey towards restoration of all things

We are rare, undiagnosed, and orphaned

Tom Elenbaas

This past month was Dysautonomia Awareness month. I know… you probably don’t know what that is. Hence… an awareness month. I only know about Dysautonomia because my family deals with the reality of it every day. But before I go there, let me share a few other things.

If you don’t know the phrase, “rare, undiagnosed, or orphaned diseases (diseases with under 200,000 people diagnosed)” then allow me to introduce you to a group of people who are all around you that you may not recognize or even notice. Because medicine is always a developing discipline and because we are constantly learning more about the human body, more diseases and disorders are being discovered and diagnosed daily through new research, genome mapping, and new discoveries. New disorders and diseases are cropping up as a result of new environmental factors, expanding gene pools, and even our exposure to new chemicals and toxins. Around you - every day - are families who are dealing with medical issues and concerns that are referred to as “rare and undiagnosed or diagnosed, but orphaned.” These families are often dealing with ongoing symptoms that do not clearly fall into a defined category of the current medical world’s library of knowledge. These families often deal with frustration, loneliness, misunderstanding, lack of support , questions, and ultimately weariness.

I didn’t know much about this world until the last 5 years, either. Though our family has been dealing with some crazy health issues for at least 15 years, over the past 5 or 6 years I’ve begun to understand the struggle and battles of multiple, multi-system symptoms that have seriously affected our family’s quality of life. From the weekly time we spend in multiple doctor’s offices and clinics, to the fights we have with insurance companies, to the conversations we have to explain the undiagnosed (unexplainable), to the uphill battle of coordinating numerous specialists across multiple hospitals, to the many medications and ER runs, to the lost time, to the hours on the internet, to traveling out of state for medical care… this is a wearying journey. Along the way, we have made new friends - friends who we’ve met in doctor’s offices or on the internet or right in our own neighborhoods, churches, and schools who deal daily with a rare, undiagnosed, or orphaned diseases or disorders. There are remarkable similarities in the stories of people who often silently struggle to do their best to help their families survive without the necessary diagnoses code the insurance company requires for payment, without even a name that can at least give clarity to the daily insanity or some relief of the daily symptoms that keep them from doing the things they want to do.

I’m amazed almost daily at the resiliency of the human spirit to overcome. I have numerous friends who are dealing with debilitating diseases, disorders, and chronic medical realities. I’ve watched the amazing ability of people I know to compensate, rethink, and thrive even with medical issues that seem insurmountable. I’ve seen friends respond to life-altering news and forge new paths into the future. I've watched as friends have lost their children at too young an age. I’ve been encouraged and inspired by the courage of normal people to face seemingly harsh realities that have given me strength and hope.

Back to our family. Some of you who will read this will know our family personally. You know me, my wife, or our 4 kids. Some of you don’t know us at all. Most would probably say we seem fairly normal and I would say that I have beautiful, smart, engaging kids (granted I am partial to them!) We were told each of our kids were very healthy when they were born, or that they just had normal issues many people deal with. Not much in our appearance would indicate any one of our family members has much going on medically. However, our daily journey has been one that has included unique ocular issues, various muscle concerns, failure to thrive, nerve problems, a tumor, dysphasia, multiple joint issues, numerous lung issues, immune system issues, rare skin issues, various problems in the brain (spare the jokes!), significant daily gastrointestinal pain and damage, fatigue, heart concerns, daily headaches in multiple family members and many more. At this point, we have some diagnoses like extrinsic neuropathy, gastric dismotility and neuropathy of the small intestine, narcolepsy, polymorphic light eruption, some potential form of Ehlers Danlos syndrome, Dysautonomia, connective tissue concerns, gastroparesis, peripheral neuropathy, and possibly some mitochondrial issues. We continue to seek genetic testing which insurance has denied covering several times over the last two years and we try daily to manage the symptoms that affect my wife and kids on a daily basis - some that have few options available. Though we’ve made some progress over the last few years, we’ve paid the price to do so with endless hours in specialist offices, the costs of medical expenses and medications, months apart separated as a family for out of state medical care, and lost time with friends, family, church, neighbors, and each other.

Why do I tell you all this? I’m not sure. I’m not looking for a pity party. I’ve hesitated to say much except to close friends over the past several years. My friends have even joked that we are major donors to the new DeVos Children's hospital. There are families dealing with so much more than we are and I salute their bravery, courage, and fortitude. I suppose it’s because we, like all the others in our shoes, sometimes feel alone in the chronic medical journey. Honestly, I don’t even know what it would look like to not be alone. I know many of you - our friends and family - love us, and yet I also know that you often don’t know what to say or how to help and we sometimes don’t know how to receive it or explain our battles that week. I’ve thought a lot about dysautonomia, rare disease, and invisible disease awareness months, and wondered what it means to raise awareness for people like us. I’ve thought about my position in our church as a leader and I’ve struggled to ask for the help when and how we need it. I’ve said “I’m ok” too many times when I’m not, and even when you’ve called “BS,” I still often don’t know what to do. We have numerous specialists programmed in our phone contacts and they’re often not sure of next steps, either. That’s the plight of people dealing with rare diseases.  I guess a way for me to raise awareness is simply this: if you know a family dealing with ongoing medical issues, know that it is often a lonely, weary, difficult way to live. The people like us that I know personally are just trying everyday to do three things. First, they’re trying to survive and make it one more day with as few issues as possible. They’re working day and night to make life more livable and find a way, if there is a way to be and get healthier. Second, they advocate and research every day in the hopes of finding a breakthrough or helping family members receive better control of their symptoms. Third, they’re trying to do the things they enjoy and be an active and vital part of their family, friends, and communities. Kids are simply trying to be kids and keep up on the playground. They are doing their best to be and appear normal because everyone wants to fit in. No one wants to be the needy one. No one wants to ask for help. Asking for help is hard for anyone. Asking for help when you don’t have clear diagnoses makes it even harder. Trust me, there are people all around you every day who are struggling. They often look normal but feel invisible. Knowing you know and care makes a huge difference.

So lastly, a tribute. To all of you out there who are dealing with rare, undiagnosed, and orphaned disorders. To all of you who are dealing with chronic pain. To all of you who look good but worked so hard just to get out of bed and through this day and attend work or school, see a friend, or attend a gathering. To all of you caregivers who have sacrificed your life, your free time, your heart, your friends, and your hobbies. To all of you who wake every day and fight the system, who speak against the “can’ts,” who endlessly seek medical help, healing, and hope. To those of you who are scraping it together to pay the next medical bill or get that new medication. To all of you who have been alone, discouraged, and weary. To those of you who choose joy when you could give in to discouragement. To my kids who deal daily with medications, pain, fatigue, supplements, doctors, tests, disappointments. To my wife who has given up so much of her life in pursuit of a more healthy life for our family. You are my heroes. You are worth more than anyone will ever understand. You are inspiring and I’m proud of you.  I am so very humbled to be blessed by you. And I’m sorry. I’m sorry for the times when I’ve given up, given in, let go, been discouraged, and felt like throwing in the towel. You are worth more than you can imagine and no matter what your body tells you, the world tells you, or the enemy of your spirit tells you, you are special because God made you just as you are and He will provide what you need for today, and again for tomorrow.

So, for those of us who live in the world of the rare, undiagnosed, and orphaned diseases - we will continue to hope for better symptom relief, another medical breakthrough, a series of good days and weeks and months, and moments of peace that are more than you could wish for. And because I also believe in the restorative power of Jesus, even when there isn’t a cure or diagnoses or a prognosis, we can still be joyful, grow in character, have hope in our God who loves us and will never let us go.

"We are full of joy even when we suffer. We know that our suffering gives us the strength to go on. The strength to go on produces character. Character produces hope. And hope will never bring us shame. That’s because God’s love has been poured into our hearts. This happened through the Holy Spirit, who has been given to us." (Romans 5:3-5)

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