Support Paula: Mom & Health Educator Facing Chronic Illness

Paula Kadanoff is organizing this fundraiser.

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Summary:

I’m asking for $15,000 to fund my complex chronic health condition. For the past three years I’ve been constantly putting out health related fires. This money would help me to avoid permanent damages by funding appointments and treatment that directly address the underlying problems in a sustainable, long-term way.

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Hello, my name is Paula, and I am a proud mother and dedicated health educator. I have spent my life supporting others, but now I find myself in a position where I need help. For the past three years I have been battling two debilitating chronic illnesses: Hypermobile Ehlers-Danlos Syndrome (hEDS) and Mast Cell Activation Disease (MCAD).

About My Conditions:

Hypermobile Ehlers-Danlos Syndrome (hEDS) is a genetic connective tissue disorder that causes me chronic muscle pain, extreme fatigue, near constant light-headedness and many other health challenges. See EDS Society for more info.
Mast Cell Activation Disease (MCAD) makes my immune system overly sensitive, causing anaphylactic allergic reactions to everyday substances like food, fragrances, and even changes in the weather. For the past three years I have eaten only rice, chicken and sweet potatoes, and that's under the care of a top MCAD doctor. I’ve been filling in the nutritional gaps with expensive supplements but that’s not a long term solution. People with EDS are more prone to MCAD. See Mast Cell Action for more info.

These conditions make daily life incredibly challenging. I can only work 15 hours a week, drive less than 20 minutes at a time, and operate at about half-capacity in my energy levels. This means we have spent down our savings, have limited earning potential, and have mounting medical expenses as most EDS/MCAD specific care is not available by providers accepting insurance (so wrong, but true).

Why I’m Asking for Help:

Last year's medical bills alone were approximately $10,000. However, this fundraising effort is not to cover those yearly expenses, though help would be useful, but because in order to get out of this state of medical danger, I need an *influx* of EDS/MCAD specific care that I can't otherwise afford.

Without this funding, I will have to pick and choose what I can fund this year and spread out the care over several years. However the risk to this longer timetable is it could cause worsening health consequences. As sick as I am, many with EDS and MCAD are much sicker. My doctor regularly tells me I'm one of her healthier patients. It is scary.

This spring it became clear that tailored EDS and MCAD care really are the ticket to me regaining a stable and thriving life. I am so motivated to, one day soon, grow my newer freelance business, raise my child with the energy to, for example - hike or take a full day outing, live without carrying my epi pen in my fanny pack all day, or have to personally cook every morsel of food I will need to eat, from a limited list of 3 ingredients.

I'm asking for your help to raise $12,000 to cover specialized care I need in this new school year. Your support would help me access appointments and treatment for hEDS and MCAD, such as:

$2,000 neuro-visual therapy,
$2,000 MCAD endocrinologist in Chicago,
$1,500 EDS/MCAD gynecologist in NYC
$5,000 EDS key musculo-skeletal treatments,
$1,500 MCAD nutrition specialist and supplements

Providers who specialize in EDS and MCAD are important because not only are they best suited to navigate the nuances of these complex health problems with current best practices, but generalized providers can unintentionally cause harm in EDS/MCAD patients.

How Your Donations Will Make a Difference:

As a health educator with a commitment to mutual aid and community care, I ask for help now, knowing that I will do everything I can for you all and our greater communities in the future. If you are able to donate, sooner is better for the overall fundraising effort.

Thank you for taking the time to read my story and for considering supporting me on this journey. Feel free to reach out with any questions. Your help means the world to me and my loved ones.

With gratitude,

Paula

P.S. Scenes and stories from living with the conditions...

Electrodes: I've had approximately 20 ER visits and many medical interventions. For example, I received iron infusions this past winter. While the infusions were ultimately helpful they led to a series of anaphylactic allergic reactions that caused a real set back as well.

Sweet Potato “Muffins”: One of my staple creations - sweet potato puree muffins made with homemade rice flour. I’m grateful for my safe foods because some people have it much worse and end up on feeding tubes.

Cervical Collar: I now wear a cervical collar for longer car rides as do many with hEDS. The collar protects me against the movements in the car that were causing full-body neurologic symptoms like migraines, numb fingers, and dizziness. Proper hEDS physical therapy can strengthen the neck’s supportive muscles, among other gains. General physical therapists, without EDS training, commonly cause harm to people with EDS.

Nebulizer in NYC: I’ve gotten used to doing my treatments wherever I go. This nebulized medicine, Cromolyn Sodium, coats my lungs and acts as a barrier for 4 hours at a time - protecting me from airborne allergens.