After years of waiting she received the diagnoses of Ehlers Danlos Syndrome (EDS) , Postural Orthostatic Tachycardia Syndrome (POTS) , and Mast Cell Activation Syndrome (MCAS) between 2015 and 2017. These conditions are rare and this grouping of them is casually referred to as “the trifecta” by specialists, researchers, and fellow patients. For sake of simplicity we chose to give a more detailed explanation of these conditions and how they impact Britta on her Caring Bridge site: https://www.caringbridge.org/visit/brittasjourney
After receiving these diagnoses and proper treatment Britta gained over a year of remission! This afforded her the opportunity to work and travel, and even mostly leave her mobility tools behind.
Sadly, she lost that remission at some point in late 2018, and 2019 was a very frightening and challenging year. The first half of 2019 was very painful and scary while she battled a host of symptoms, many she'd never experienced before and was dependent on a wheelchair in January and February. It wasn’t until things escalated further in June that is was clear her MCAS was out of control with dire consequences. She was hospitalized in June and then referred to a transitional care center (similar to a nursing home) but the required physical therapy in the hospital was exacerbating her EDS so we chose to move her home and help as much as we could. By the end of July, she was gaining some ground and regaining more use of her hands and feet and we hoped we had finally moved into the rehabilitative stage of recovery.
August was phenomenally devastating. Many months later we are *still* fighting to get her back to where she was in July. In the day that changed everything, chemical fumes came through a shared wall and within seconds she struggled to breathe or talk and could barely move her limbs. She was rushed out of the house and struggled to manage symptoms in the days following. We aired out the house and brought her back a few days later but she couldn’t come in more than a foot without the symptoms returning. We had the house aggressively treated with ozone to remove the smell but that caused many more problems. After three months of remediation work, it was determined that the smell was trapped in items with foam or fabric and had to be removed for the house to be safe for her again. Luckily that fixed the problem and there are no lingering smells -- but in all this process she lost essentially every single "soft item" in her possession: mattress, couch, chairs, all her linens (clothes, bedding, blankets, etc.), pillows and towels. She’s been relying on a few borrowed items as she can’t afford to replace what she needs. We set up an Amazon List of items she needs. She has started receiving gifts through this list and it has been an incredible encouragement.
While all that was devastating from a single day in August, the worst aspect is one we've been fighting tirelessly ever since: astronomical food & smell sensitivity. Britta now has very powerfully negative reactions to smells of many kinds and has become very sensitive to food. It took over two months-on a continuous Diphenhydramine (Benadryl) infusion-to get her to the point where she could safely eat more than a tiny few things. Unfortunately, she is in another escalation now and is reacting to new triggers and struggling to safely eat. We *must* get her stabilized before she loses any more ground.
This is where we need your help.
All three of her conditions are rare and limited in specialists but this is especially true of MCAS. We are near the end of the options that her local (Minneapolis/Saint Paul/Minnesota overall) doctors (who are covered by her insurance) have for her and things are escalating again. There are three experts who helped her get into remission the first time who are vital for her to see as soon as possible. They're all highly regarded specialists and treating similar patients all over the world. Unfortunately, the costs for the doctor’s time is entirely out of pocket and includes out of state travel to see them in person and re-establish care (once care is established, they can treat her remotely). Before travel expenses, the cost to see these three doctors and follow up after returning to MN is $10,725. Britta’s primary doctors in MN can help carry out the recommendations of these specialists. And naturally, there are other costs involved in these trips.
There are more treatment options to try if we can raise the money. One that has been especially helpful for many in her MCAS support group is only $200 and she can start as soon as she can pay for it.
In the last year of illness, Britta has accumulated $12,782 in medical bills despite having good insurance. Unfortunately, some of these bills are now in collections. She has applied to a debt management support program but can’t join the program without monthly income. Gaining your help with these medical bills will relieve the stress of collections and allow her to continue to see her providers.
Britta has many other bills that can’t wait. She currently has $3,721 in critical bills in January. She has always been a saver and we have had a front-row seat to her doing all she can to keep bills paid but she is now at the absolute end of her resources. She's receiving some assistance from her state and county and using community resources like the food shelf, but still needs much more help. After significant research and weighing *all* of the options within and far extending from the Twin Cities we’ve determined that it’s best to keep her in her current home, which is already fully handicap accessible and has many MCAS protections. We are using this campaign in part to support her basic needs like keeping the rent paid and the lights on so she can stay with her beloved dog and continue recovering in a home best suited for her many needs.
Britta has relied on her adjustable bed to help her manage many symptoms of EDS, POTS, and MCAS. She lost her foam mattress to the fumes incident and now reacts to most kinds of new foam and the fire-retardant chemicals sprayed on most mattresses. A masked five-minute visit to a mattress store left her sick for three days. She's been sleeping on a borrowed older mattress on a flat frame but is now reacting to that, too, even with several layers of blankets separating her from the bed. The Purple 2 Hybrid Mattress is the only type we have found that is free from off-gassing, formaldehyde, and other triggers. She has been planning to save up for it once she starts working again, but we are now concerned about how things are escalating and don’t think she can wait that long. We’ve added linens and other immediate item needs to go along with the bed to an Amazon List .
Some of the treatments and medications helping her today are not covered by insurance even though they are managed by her doctors. We can’t have her stop them, but she can’t afford them on her own right now. The average monthly cost of these treatments is $644. Some of these items are listed on the Amazon List, others are purchased through her providers or pharmacy.
Each MCAS flare brings significant pain and dysfunction to her hands, arms and legs that lasts for at least a few hours. When she is in a cycle of constant flares like she is now she rarely returns to full function in between. This has exacerbated both POTS and EDS and she will need physical therapy at some point. We are working on adaptations to help her be able to work and care for herself in her current state. Before Christmas, she had a few good hours a day and did a few hours of billable work. We are working to get her back to that point and searching for the right part-time opportunity where she can work from home during the good hours. The long-term goal, of course, is to get her back to working full-time in the career she loves and greatly misses.
Wow. It is a lot. Thank you for reading this far, we know it is overwhelming. We are fighting alongside her every day, believing remission is possible and she can someday safely return to a version of the life she had before. We miss her sparkle and our community isn’t the same without her. We hope you will link arms with us and help bring her back.