The journey started in early 2022.  Finally, after almost a year of being bounced from doctor to doctor and treatment to treatment, our daughter Leah was diagnosed with Complex Regional Pain Syndrome (CRPS) – also known as RSD and AMPS.  It was relieving to finally understand what it was that was beating her up, however that meant the next step in our process had to begin – and the understanding that this condition is brutal.   She was referred to and accepted into an inpatient, hospital-based, chronic pain management program where she stayed for more than a month.  The program was long and intense, and Leah was able to regain the most basic functionality that she had lost (she couldn’t even hold a pencil to write or unfix her arm from a flexed position).  However, the impact did not end when she returned home; daunting follow-ups and additional treatments have needed to continue.  Fast forward a couple of years and there has been tremendous regression – the pain has come back with a vengeance and, as is sometimes the case with CRPS, it has spread to other limbs.  The amount of medication and treatments we have tried are unimaginable and unrealistic – all with very little to no success. Throughout our whole experience we have had to advocate strongly for Leah, or we would be swallowed up in the medical system and continue spinning our wheels trying to figure out what to do next.   Some would even say we have to be extremely annoying until we get what we (she) needs.   The more we talk with others going through similar situations – it is perfectly clear – the glaring gap for anyone caught up in this process is that families need more support. This isn’t only a condition that affects the patient; the entire family is impacted – just in a different way.  We are fortunate to live in an area where doctors are everywhere, the pain program was within driving distance, we are both employed by amazing companies that treat us with respect and empathy, we have great medical insurance, and we had a strong support system outside of our own family.  Many, unfortunately, do not have these luxuries (sad, but true).   Many families can’t find pain programs for their loved ones, and if they do it is not within a reasonable distance.   Many do not have health insurance that will help pay for treatments or the available means to cover the sudden financial burden that any similar situation unfortunately results in.  Others can’t afford to take off from work to supply the care needed or even know where to go for help. And lastly, as is the case with us as well – even with medical insurance, most of the treatments CRPS patients go through are not covered by insurance.  No family should have to see their kid suffer just because they can’t afford to help.

That is where the Heal Foundation (anagram for Leah) will come in.   This foundation is not for Leah or for our family. This is for all of the other families that are struggling and need help.  Although the main goal is to support those fighting CRPS, the Heal Foundation will be available for families to tap into for financial assistance for travel, lodging, food, supplies, whatever they may need while taking care of their child with any similar situation.  Our vision is to work directly with hospitals, outpatient facilities, local support groups, and by word of mouth to ensure those in crisis have the additional support they so desperately need.   How, where and when we support will undoubtedly grow and improve over time.  No assistance is too little; and we know there are many families out there that need our help.    

 

A little about the unknown (CRPS):

Complex Regional Pain Syndrome (CRPS), is also known as Reflex Sympathetic Dystrophy (RSD) and Amplified Musculoskeletal Pain Syndrome (AMPS). It's a condition where neuropathic pain dominates every aspect of your life all day, everyday. CRPS is a debilitating chronic illness that affects the nervous system, causing severe, continuous pain which can move from limb to limb. The pain is excruciating, often described as burning, throbbing, or stabbing.  CRPS (also frighteningly known as the “suicide disease”) is frequently misunderstood, misdiagnosed, and under-treated, and it can lead to devastating consequences for those living with it. It is rated as having a pain level of 42 out of 50 on the McGill Pain Scale, considered one of the highest pain levels possible on the scale, often described as more severe than childbirth or limb amputation pain. What makes CRPS especially difficult is that it can be triggered by something minor - an acute injury like a sprain or strain, a simple medical procedure or non-invasive surgery.   For Leah it was an injury during softball, her true passion, and to this day she can't bare to even hear the word.  

The lack of awareness about this condition means that patients like Leah often find themselves struggling not just with their pain, but with isolation and frustration from this invisible illness that not one seems to know about.. It’s hard to explain the reality of living with CRPS to those who don't understand it, and it’s even harder when doctors aren’t equipped to help and insurance companies deny the very treatments that are recommended to help.