Why I Fundraise for Erythromelalgia After My Daughter's Diagnosis
By: Kristin Hooper
I advocate and fundraise for erythromelalgia.
My daughter is beautiful. She is 16 years old. She loves chilling with
her friends, playing rugby, listening to music and her baby sister, Hailey. It is hard to believe that only five months ago she was a happy, healthy teenager who was studying hard at school and looking forward to having fun in the summer holidays. But her life was suddenly turned upside down when she developed the rare neurovascular chronic pain condition known as erythromelalgia (EM).
Madison first noticed that something strange was happening when her feet and hands developed a mottled rash and started to swell and burn. I was frantic; weeks passed but doctors didn’t seem to know what was wrong with her. The burning in her feet and hands became so severe it began to affect her mobility. As she lay on her bed sobbing for the pain to stop, I felt every mother’s worse nightmare had begun. My precious child was in more pain than you could ever imagine, yet I had nowhere and no one to turn to.
Every test and scan was coming back negative. Doctors still didn’t seem to have a clue what could be wrong with her, except one. However, as her skin was mottled rather than the vivid red described in medical textbooks, he was trying to confirm a diagnosis of EM, a.k.a. “burning man syndrome.”
I barely slept for weeks, spending hours combing the internet. I was desperate for a clue, any clue, of whether this rare syndrome might be what was wrong with Madison. By now she was in so much pain she had been admitted to the hospital and put on an IV of Benadryl, Ativan and Colloid. This potent cocktail did nothing to help; it didn’t even sedate her. She could only find some relief from using ice on her burning skin.
It was late one night – and by chance – that I stumbled across The EM Warriors, a patient support and information network for erythromelalgia. I was shocked to read that approximately one in 100,000 people in the US develop EM, and that it could affect any part of the body, even internal organs. It didn’t discriminate either, which meant that anyone could develop its genetic, idiopathic or secondary forms, even babies. Listed as the most common symptoms were: intense burning pain, skin redness (erythema), swelling, tactile allodynia (hypersensitivity), pricking, itching and increased skin temperature. I couldn’t believe it – Madison’s symptoms sounded exactly like EM, except that her skin was mottled with a lacy rash. I quickly joined their website and emailed the help desk.
Almost straightaway a lovely lady from the support team contacted me. She sent me tons of information and facilitated the tools for self-advocacy. More importantly, she helped educate Madison on the best way to try to manage the painful symptoms, telling her to stop icing her feet and hands (as it can lead to ulceration, necrosis and permanent nerve damage) and suggesting less aggressive cooling methods. She also told Madison’s doctor about the most effective drug protocols.
The emotional support I received was incredible! What really blew me away was that I had someone on the other end of the phone when I needed them. I’d email them requesting a support call and they would phone almost immediately. They phoned Madison too and that really meant a lot. The EM Warriors helped my family every single step of the way and will always be a very special part of our lives!
Without The EM Warriors I don’t know what we would have done. They were the only support organization that gave immediate help and offered expert advice. I am so grateful that her neurologist was made aware that some cases of EM can manifest as severe mottling (livedo) – especially in the early stages. Without that insight, Madison wouldn’t have been diagnosed so fast for sure, nor would she have had an off-label lidocaine infusion to reduce her pain. I didn’t realize our need for information and support would be ongoing though; sadly it doesn’t miraculously stop when you manage to find a doctor who is willing to help.
I have since learned there is no cure for erythromelalgia, only attempts at symptomatic relief via trial-and-error medications, cooling products and cooling fans and attempts to ease the flare-ups by minimizing triggers (the most common being heat, stress, fatigue, exertion and pressure). Drugs that may bring some relief to one person with EM, however, can actually make flare-ups worse in another. Lifestyle changes are crucial too: keeping an optimal temperature of around 65 ºF (although some need it much lower), wearing unrestrictive clothing and footwear, cutting out stimulants like coke and coffee and even avoiding spicy food, etc.
Most doctors have never heard of erythromelalgia and are disbelieving of something that is pretty much invisible when not in a flare. Unsurprisingly, many with EM struggle and end up self-diagnosing, just like I did with my daughter.
I was shocked to discover that a lot of people are never actually officially diagnosed. Imagine all that time without adequate medical support and the cost of searching for answers. The EM Warriors even found a doctor in our state who was familiar with EM and willing to administer the infusion!
EM Warriors are a small, self-funding charitable organization that provide an amazing support and information service totally free of charge – but they desperately need manpower and donations. That’s why our family is going to do what it takes to raise money for their hotline service and research fund. To kick things off, the amazing Girl Scouts of Florida Troop 106 and I did a sponsored car wash and have plans to do more.
I have even volunteered to help with their Parents and Little Warriors Club too. In our moment of darkness, The EM Warriors reassured me that my daughter and I were not alone and that there was hope – I’ll never forget that!
If I can offer another parent or person who has EM half the support and hope that was so freely given to me and my beautiful daughter, I will feel blessed.
Who are The EM Warriors?
The EM Warriors: Erythromelalgia Patient Support and Information Network are a self-funding charitable association dedicated to EM powering, educating and encouraging all those living with or affected by erythromelalgia and its comorbidities.
Do you or a loved one think you may have erythromelalgia? Would you like more information about the syndrome or have EM-related support needs? Visit the EM Warriors website or email their support team.
Please consider donating to help us sponsor independent research into erythromelalgia.
We want to hear your story. Become a Mighty contributor here.