Help Me Manage Medical Expenses for My Disorder
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Help Me Manage Medical Expenses for My Ehlers-Danlos Syndrome and Other Related Conditions
One of many hospital and emergency room visits. (pictured above)
Me receiving dry-needling therapy on various areas of my body (pictured above)
Me wearing kinesio and leukotape to assist in knee stability and pain (pictured above).
I take at least 21 pills a day to assist in treatment of EDS, pain, endometriosis, anxiety, and depression. (pictured above)
My name is Enanna Sheena, and I'm a 32-year-old woman living with Ehlers-Danlos Syndrome (EDS) and other related conditions, including endometriosis and migraines. These conditions have impacted my daily life and made it difficult for me to manage even the simplest tasks. I'm reaching out to ask for your help in managing the expenses associated with my medical treatments and related care.
I was recently diagnosed with this disease, after a lifetime of suffering with no answers. I am lucky enough to receive care at the University of Wisconsin-Madison Pain Clinic. Dr. Rudin finally connected the dots and assisted in me finally getting some relief. Having the diagnosis has been extremely informative in adaptive living, preventative pain measures, and multidisciplinary medical treatment. I am still learning about how to navigate this disease, especially as I age and start to feel more pain and deterioration of my joints. I have also been lucky enough to share my diagnosis with my brother and mother, who also suffer from EDS. This has been a significant discovery for me and my family.
EDS is a rare genetic disorder that affects the connective tissues in the body, causing a variety of symptoms such as chronic pain, dislocations, subluxations, and fatigue. In addition to EDS, I also struggle with endometriosis, migraines, and other related conditions that have made my life extremely challenging. This also means I am very easily injured, which happens frequently.
Over the years, I have tried numerous treatments, including surgeries, physical therapy, psychology/psychiatric services, supplements, kinesio tape, acupuncture, various medications, over 1000 injections all over my body, and pain therapy support groups. I have also undergone six knee surgeries in addition to the treatments I have received.
Regenerative medicine has been the most helpful for me, such as Platelet Rich Plasma (PRP) Injections and Dextrose Prolotherapy Injections, but unfortunately, these are not covered by insurance. This means that many of the services I need are out of pocket for me and my family. This has created a significant financial burden for us, as we have had to spend a substantial amount of money on medical expenses.
Furthermore, managing my medical conditions has meant that I have to use up all my paid time off from work, which leaves me working without pay for at least 7-10 days out of the year. This has made it difficult for me to cover my medical expenses while also trying to maintain a consistent source of income.
In addition to the physical and financial burdens, having an invisible disability also comes with its own set of challenges. I often have to worry about whether schools, jobs, and social events are handicap accessible. I have had to miss out on social activities, and I have learned the hard way that this world is not always meant for people with disabilities. There are so many barriers that make it difficult to access certain rooms or areas where my friends and loved ones are.
Expenses (services, equipment, etc.) that your donation will help me with:
- Adjustable Bed to assist in relieving pressure off of my joints during the night, in addition to getting restful sleep
- Myofascial Release Massage - While myofascial release massage is covered by physical therapy services, I require this service as a full-body approach, which can take upwards of 60-90 minute long sessions on a weekly basis. The frequency and length of treatment is not covered by insurance.
- Body Braid - People with hypermobility get extra benefit wearing the Body Braid. The extra feedback and resistance reduce the risk of injury from overstretching joints, which is common with hypermobility. Ehlers Danlos Syndrome (EDS) is a genetic disorder of connective tissue that can cause severe hypermobility and many people with this condition have become keen Body Braid users. While safe stretching can be a very healthy activity, people with hypermobility can easily overstretch and cause injury. This is particularly tricky because people with hypermobility are “good” at doing stretches but also tend to overstretch causing problems and pain. This is also not covered by insurance.
- Regenerative injections/treatments that are not covered by insurance, such as Platelet Rich Plasma (PRP) Injections, and Dextrose Prolotherapy Injections
My husband, Aaron, has been incredibly supportive throughout my journey, especially prior to my diagnosis of EDS. He has taken "in sickness and in health" very seriously and has been my rock through all of my medical struggles. It takes a village to support a loved one with Ehlers-Danlos Syndrome and other related conditions, and I'm lucky enough to have a supportive husband, family, and close friends. But even with their support, the financial burden of managing my medical expenses has been overwhelming.
I'm reaching out to ask for your help in managing these expenses so that I can focus on my health and continue to pursue the treatments and care that I need. Your support would mean the world to me and my family. Thank you so much for taking the time to read my story and for considering a donation.
Best,
Enanna
Organizer
Enanna Sheena
Organizer
Madison, WI