The Leprosy Journey

Back in August our daughter was diagnosed with Hansen’s disease, commonly known as leprosy.  What in the world, right? In summary leprosy is indeed a serious, debilitating disease BUT today because of effective medication it can be treated and cured if it’s caught before disabilities occur, and those on medication are not able to transmit the disease and therefore can lead regular lives. A serious diagnosis can turn life upside down in a place with limited medical care. However, it turns out that although we do not have a dermatologist or an ENT in town, we DO have easy access to leprosy treatment at the neighborhood community health clinic (puskesmas), and it's free through the WHO. So. Right now she is stable and we are alright and our life continues pretty normally? She’s okay. We’re okay? I think.

Compiled below is a series of posts that Kacie wrote on instagram about this journey we've been on. This is a story that’s at times hard to share about because of how shocking a word “leprosy” is, and because no one can relate to walking through leprosy - it makes me feel really foreign and strange. But it is our actual life, so thank you for for listening and caring. Photo from 20 minutes after first hearing that she possibly had leprosy - Isaac and I were reeling, wondering what it meant for her, not knowing what was next, wondering where to see a doctor, wondering if it was true if we’d have to move to find treatment. God has walked with us through the minutes and months since those first moments.

SYMPTOMS

At the beginning of the summer she asked me, “Mommy, why does this spot on my leg feel different from the other skin?” There so many things my kids notice on their bodies each day. Look at this cut, why does this freckle look like this, why is my elbow so wrinkly. So, I thought nothing of it at first but over the course of a couple of days I asked questions and was puzzled. What did she mean? I began to test it out, and when she could not sense a bowl of warm soup set on the spot but jerked away when I set it on another part of her leg, we became concerned. Isaac snapped the spot with a rubber band, and she didn’t react. That was the symptom that triggered the identification of leprosy. Numb spots, not visibly different from the rest of her skin. If she was not so pale, they’d likely be white spots, but on her you can’t see them.

There were other symptoms that were going on that we did not identify as leprosy until we learned more about the disease and were going through the diagnosis process. She had what we thought was ringworm on her back (so common here, another kid was treated for it two years prior) and it stubbornly would not go away. Three different doctors had seen the spots and prescribed over the counter anti-fungal cream. Yeah, turns out those are likely also related, though they are not numb. She had been having nosebleeds, and that also is affected tissue inside the nose. We’d been trying to keep her from picking at both scrapes on her knee and at her nose, and now we realize why it was so easy to mess with the wounds - they are numb.

It’s so crazy to look back and recognize the emergence of symptoms before we knew what was going on. Once we had a symptom that concerned us diagnosis quickly followed (more on that in the next post). It’s a bit scary, I think, to feel the responsibility as a mother to care for things so out of control, the things we can’t see and don’t know about. Oh God, help me to rest in Your ability to carry what I do not know and walk with us down those paths once we do know.

DIAGNOSIS

We texted a missionary doctor teammate in another country about Elly’s numb spots the day after she mentioned them, and he said it was unusual and should be checked out. That’s not his normal response, and “checked out” is not easy for big things here, so we asked him if he could take a look at her at an upcoming conference a few weeks later. There we carved out some time and he used an ice cube, a vibrating phone, and a little flexible piece of plastic to confirm the numbness and rule out a few possibilities. He drew lines around her spots, discovering they were quite large. And in the end, after he told me what it was not, I asked him if it could possibly be leprosy (I am the one that brought up that word, but I still thought, surely not). He said, yes, she should be checked, and while it was not an emergency, it needed to be a priority.

My heart just dropped. I said I’d put it on my quarterly list of priorities and burst into tears.

Bless him. In truth leprosy is so rare and unlikely, and Western doctors are not trained in it, and he had no experience in it. I’m so very grateful that he caught it, and grateful for his care and gentleness with both Elly and I. He is a man of medicine and of deep faith, and I have so much respect and gratefulness for his combined care of body and souls.

Upon hearing the doctor’s serious words, I went into action mode, which is my typical response to big things, and I started researching and communicating. Immediately the reality of what leprosy is these days helped us not to panic, because it is so treatable. We weren’t sure where to do testing but the missionary doctor I grew up with put me in touch with a Papuan leprosy worker and she told me to just go to any dermatologist. So, I google mapped the nearest dermatologist to the Airbnb where we were staying with dear friends after our conference.

Doctors are open at night in Indonesia, so my friend and I piled into a taxi after dinner and took Elly in to a dimly lit dermatologist’s office in Denpasar. He took a quick look at her and said he was 80% sure it was leprosy but said she needed to have a skin biopsy. He was actually so helpful. That shifted things from really-scary-possibility to likely-true-crazy-diagnosis.

We were referred to Bali’s public hospital, which was scary because the public hospital in Manokwari can be a hard experience, and I was aware that a skin biopsy might be painful. We decided to move forward and call it quitds in the middle of it all if it was not going well and we thought she would be treated better elsewhere. We went in very nervous (at least I was!). It was scary because they essentially cut a slit in your ear lobe and then move on to cookie cutter out a piece of skin from an affected spot elsewhere on the body. These two samples are tested for the presence of leprosy bacteria. They used topical anesthesia and she couldn’t feel, so it was okay. She just squeezed her eyes tight and whispered “chocolate ice cream, chocolate ice cream” over and over again to keep her mind off of what was happening. All in all because we have language and culture experience it was totally do-able for us.

We got her chocolate ice cream on the way home and she was so proud of herself. And we were so glad that it was over, and all we had to do was wait for results. I felt deep relief to have figured out the testing piece, and for a few days we were able to relax as we waited. I’m so grateful we were with those good friends that could watch our others kids while we did this testing, and were there to help us process. I’m so glad we happened to have this conference planned, and that there was a doctor there, and that it was near a hospital with biopsy capability. It was actually so smooth and fast, and we were really carried through it. So many fingerprints of grace through scary days.

This was also the total mama bear stage, feeling fiercely protective of her, making sure she was safe and okay and comforted when needed. This was where we talked her through what the possibilities were. Isaac is great at those big conversation, and she feels safe with her big strong dad. Having the two of us, screen time in the waiting room, and chocolate ice cream afterwards made for a decent day for her. And for me, I kept flashing back to the doctors and hospital days of her first weeks and months of life, as we walked through a cleft palate and reparative surgery. I felt that same sense of fear, vulnerability, fierce protectiveness, and love. I remembered sitting still bleeding myself, silently loving her with my hand stroking her one-day-old head as I wondered what the future held. And now she’s years grown and I was stroking her leg, numb to my touch, wondering what the future held.

In both times we pray in our vulnerability and God walks with us, parenting us as we parent her. It is a deep reassurance to me that my Father loves her more than I can possibly imagine.

TREATMENT

We got the results of Elly’s skin biopsy a week later, once we’d returned to Manokwari. We had been told that treatment was standardized and distributed locally all through the country (and world) via a World Health Organization program that partnered with national community health systems. The results came in as positive for leprosy, and I immediately sent it on to the head of our local clinic, which is just minutes away and is headed up by the wife the of the head of our college. She brought us to the guy in charge of leprosy for the neighborhood. They examined Elly and did nerve function tests and patiently answered all my questions. I texted back and forth real time with Isaac and with the missionary doctor that had been helping us and was consulting with infectious disease doctors. Based on their exam they diagnosed her with the more serious of the two types of leprosy, and my contacts from a distance agreed.

And then, the leprosy guy handed us the neat WHO blister pack of pills, and we took the first round. 24 hours after diagnosis. The first round of every month is the heaviest dose, after that she alternates between two and one pill every day. It is called Multi-Drug Therapy (MDT), and it is an incredible gift of God’s common grace and medical science that turns this diagnosis from a horrible, debilitating story to a year of taking medicine and a really good two truths and a lie for the rest of her life. I marvel at them every day. They are FREE. How amazing that for us and …everyone else around the world, who previously would be consigned to being hidden away or living in a leper colony, can take this stuff for free and live normally.

 From the JAMA Dermatology Journal: “In the 1980s, the prevalence of leprosy worldwide was about 12 million cases. In the early 2000s, it was approximately 800 000 cases. This dramatic change has been attributed to multidrug therapy (MDT)… The results have been truly dramatic and perhaps represent one of the most significant advances in medical history that has been largely unheralded.”

We ended up with tears at the clinic that day because Elly hadn’t figured out how to swallow pills yet and the first dose was supposed to be taken in front of the medical rep. He graciously allowed us to go home, and we practiced with chocolate sprinkles and mini chocolate chips until she was comfortable enough to get them all down.

The whole thing took several hours, but considering we didn’t have to fly anywhere and the meds were free… not a big deal! It was so shocking to walk away and realize we had a diagnosis and treatment with so little expense. Such a huge diagnosis, but then the reality was… manageable. I sort of felt like it was whiplash. But mostly, so thankful.

EXPOSURE

Do you see how little my kids are in this picture? This is around the age when Elly likely was first infected with leprosy. Wild, right? It takes on average 5 years for the disease to emerge. Can be up to 20!

Immediately after hearing the word “leprosy” suggested, we started wrestling with questions about exposure. None of us know much about leprosy, right, but about all we know is that it is infectious. We went from talking to the doctor to a kid’s club talent night, the final event of our team’s conference. Walking into that room, newly aware of the potential of leprosy, not knowing yet if she actually had it, not knowing how transmissible it was, was all pretty weighty. We asked the doctor immediately if it was okay to stay with friends the following week. The doctor came back a few hours later and told us that leprosy is not easily transmissible.

It takes close contact over the course of months (the WHO measures close contacts as 20+ hours a week together for 3+ months), and 95% of people are naturally immune (according to the CDC) So, we started masking Elly when she was in an indoor environment with people as an extra precaution and were glad that most of our activities are outdoor and open air.

Blessedly, as soon as patients are on MDT treatment, the disease no longer spreads. So, within 48 hours of diagnosis she had been on treatment long enough to have no danger of transmission. That is why you no longer see communities of people with leprosy anymore. Under treatment there is no danger. Pre-identification of the disease is the only danger, so early identification is important.

But, the people who ARE our close contacts weighed heavily on me. I told my husband it reminds me of when I was new here and tipped over a motorcycle with my car and came home weeping saying that I came here to help people not to hurt people! I feel responsible, I have put people at risk and I can’t fix it. The missionary doctor heard these questions in my voice over the phone as we debriefed one day and he responded firmly. “You cannot be responsible for a disease that is endemic in your community and that your family would not have been exposed to had you not gone there. I feel strongly about this. Like with COVID, individuals cannot take on responsibility for the spread a communicable disease that is moving through a community.”

I am grateful for him.

I talked about it with my spiritual director. I am, by personality, a helper. I went into fix-it mode with this whole leprosy thing, but I can’t fix past exposures. She asked me, if I were sitting and having this conversation with Jesus, what do I think He would say in return? The answer to her question was already there in scripture, instantly in my mind. Jesus answered those questions about who is to carry the responsibility for disease. The disciples asked him about the man blind from birth in John 9. Whose fault was it? Neither his nor his parents, Jesus said. But God’s work would be displayed in him.

How tender that is. In a culture that blamed suffering on the invisible guilt of the sufferer, and truly I don’t think any culture is far off. We look for something or someone to blame because we are afraid. That is not a weight I am to carry. And, praise God, there is a single dose of one of the treatment antibiotics that is used as a preventative medication for close contacts. We have all received this now, so cases emerging in our family are very unlikely.

THE HARD PARTS – Risks, Reactions, and Fears

Most of this story has been the relief along the way. Compared to how “leprosy” sounds, the treatability, the fact that it is no longer transmissible, the ease with which Elly receives medication, all of that has been such a gift. But there are still hard things. We are not just taking meds and sailing through. This is where you can pray with us.

One danger is a leprosy reaction, which is when the body’s immune system starts freaking out in response to the leprosy bacteria (even if is dead due to treatment). This has various symptoms and severities, but the key is that it needs extra treatment with steroids and more expertise than is available at our local clinic. If untreated, a leprosy reaction can cause irreversible nerve damage. Leprosy reactions are not uncommon - the WHO says up to 50% of patients have reactions.

The other piece we puzzle over is Elly’s nerve damage. Since most of her spots are not visible, over time we have found more affected spots and it’s sobering. We are so thankful her hands and the soles of her feet and her eyes remain unaffected, but what IS affected is not insignificant, and we do not know if it will heal. She is four months into treatment with no discernible change so far, and we may or may not see change throughout the rest of the year. And afterwards, the body may continue to heal and reactivate those affected nerves. Or not. And, if I understand correctly, there can be affected areas that we can’t see because they haven’t lost function despite having been previously attacked by the leprosy bacteria. Those areas can actually continue to lose function even during and after treatment. That’s scary.

Elly’s nose bleeds regularly, and while I know the nasal passage is frequently affected by leprosy, I don’t know what that means. What is happening inside her nose that causes that constant bleeding? When does it end? Should we do something for it? There is a new ENT in town, we have been referred there and I am relieved to have that new resource. She has been having UTIs, and we are concerned about how this is related.

Will you pray with us for her healing and protection? For wisdom for us, and those who treat her? Photo below from yesterday at the local public hospital, consulting with the ENT.