The Rat Lungworm Support Group was created at the urging of a survivor who voiced the need for support network at a public input meeting in Pahoa in 2017. Since December 2017 the Rat Lungworm Support Group has been meeting every second Wednesday of the month at the Keaau Community Center at 16-186 Pili Mua Street from 4:00-6:00 pm. The group is primarily focused on supporting the survivors and their caregivers who are living through long term effects of rat lungworm. Also welcomed to the meetings are healthcare providers, representatives from government and academia, and advocates for supporting research and prevention efforts.
The group is supported by Hilo Medical Center, the state’s leading hospital in the diagnosis and treatment of the disease, the Daniel K. Inouye College of Pharmacy and the Department of Health. For more information, contact Elena Cabatu, Director of Public Affairs at Hilo Medical Center, at firstname.lastname@example.org or 932-3160.
JOIN THE MEETING VIA ONLINE VIDEO CONFERENCING
Survivors and their caregivers interested in joining the group through the Zoom online meeting platform from the comfort of their home may join by clicking on the link https://ehihalawai.zoom.us/j/153765346. The session will be opened from 3:30-6:15 pm HST.
The screen capture below is a post on a Facebook support group for victims of Rat Lungworm Disease on the Hawaiian Islands.
It shows that the Hawaiian authorities are severly mishandling the treatment and prevention of this disease which is far more prevalent on the Hawaiian Islands that anywhere else. They continue to downplay the severity of Rat Lungworm Disease and misinform victims of it's treatment so as to not risk a highly profitable tourism industry there. The Hawaiian legislature also allotted one million dollars in public money for a Rat Lungworm campaign that completely bypassed the hard work of Dr. Susan Jarvi and Kaye Howe the top researchers on the disease in Hawaii and have taken a route of a watered-down campaign of public announcements and printed literature. Anyone who suspects being infected by a slug or any other Rat Lungworm parasite carrier can have the slug or snail tested at the Sue Jarvi lab for a small $25/sample charge, which is honestly far below their costs of reagents or personnel time for processing the sample. Call 932-7148 for more information if you're interested.
Anyone who has gone through this disease knows that it's so difficult to find information out there that is consistent, clear, and informative as to exactly what to do if you or a loved one gets sick.
You also know how much you have to become your own doctor, your own healer, and when it feels as though you are fighting for your life the last thing you have energy for is searching for answers.
When I got sick it was Kay Howe and Aurita Maldonado's stories and guidance that helped me navigate through it. They helped me know I️ was not alone and that I'd get to the other side of it.
Kay Howe and I️ have been compiling information, links, stories from the victims, and links to supportive doctors, specialists and nutritional support that has been effective for those who are healing. Kay has shared her knowledge with thousands of people across the state and I can't possibly try to count the lives she must have saved through her dedication in action. And hearing the journey of those who have lived it is LIFE-AFFIRMING. I️n the moments I️ nearly gave up fighting, it was hearing others experiences that reminded me I️ was not alone.
It's also so important that our experiences are documented because it's still considered the "norm" that people get better in weeks or months, when we know dozens and dozens of people have been dealing with symptoms for years after first infection. Doctors are just beginning to scratch the surface of understanding this disease and the way it impacts people differently, and the severity of cases coming out of Hawaii have been on the rise and it's important that they are not swept under the rug.
I know it is not easy to share your journey - I have been struggling the last 3.5 years to find the words myself and all of my energy has gone into just putting my life back together, to climb out of medical debt and live a full life with chronic pain.
My life will never be the same, I️ know this - and I️ know that no one deserves to go through this hell, and if sharing our journeys can save others lives - or help them regain their life back faster, then it is worth it.
If you'd like to share your journey or any part of it, please send it to
Ken Curtis who will be sure to make your voice heard.
Feel free to share anything you feel called to share - from one single line to a full blogpost.
Some topics I️ have heard the community and medical profession most interested in documenting:
- Describe the illness for you specifically, and what residual impacts has this had on your life and your health
- what has been most effective in helping you to get better (from Western medicines, to natural medicines, alternative modalities, specific doctors etc...
- do you still experience pain now? Difficulty sleeping?
- do you have Difficulty with critical thinking, clarity mentally, brain-fog or with communication?
- has it been difficult for you to go back to work? If so for how long? This may also be helpful for you to document for those needing to apply for disability.
- any links you have to following your story/path/blog.
Thank you in advance. I know the resolve and resilience it takes to get through this and I am so inspired by each one of you. Massive gratitude to Kay Howe who has been a warrior and champion for so many - likely saving hundreds of people from having the same fate as her son.
- Update -
Aloha everyone - I have had the great honor to work with one of the best Chinese Medicine Doctors in the world whom studied under the last Emperors Physician in China. He later came to the United States and founded the Oriental College of Medicine in Portland Oregon. His name is Dr. Fruehauf. He literally saved my life from a severe case of Ratlungworm Disease.
I previously had contracted an autoimmune disease and the worm ate a maze through my brain. When I came to Dr Fruehauf, I had severe brain swelling, and loss of all functions, and my body was shutting down. Doctors told my family that I would be brain damaged for a lifetime and be on permanent disability.
Dr Fruehauf saved my life, and helped my brain to heal beyond what any Western Medical Doctor thought was possible. This past week he told me that he developed a formula into a pill form for others going through RLWD. As I know many on the Hawaiian islands can't travel to Portland Oregon to see him, I wanted to be sure to let you all know that it will be available in a few weeks and I will post the link for it here.
Wishing you all a speedy recovery, and if there are any supplements, herbs, medicines or doctors that have most supported your healing- please do share them here with others. Mahalo - Rebekah
Hawaii Farm to School Rat Lungworm Disease Prevention Workshops Videos - Click Here
Governor of Hawaii Task Force on Rat Lungworm Disease Treatment Guidelines released on August 30th 2018 click here
Rat Lungworm Disease
The purpose of this website is to be of service to anyone who has been stricken with Rat Lungworm Disease (Angiostrongylus cantonensis). It was developed by Rebekah Uccellini with the assistance of Kaye Howe - both former residents of Hawaii. Rebekah was infected with Rat Lungworm disease and Kaye's son was also a victim when infected over 9 years ago. Kaye Howe went back to school and entered the Tropical Conservation Biology and Environmental Science Masters Program to become a full time researcher on the disease and has been working with Dr. Susan Jarvi at the University of Hawaii in Hilo since 2011. Between these women is a wealth of knowledge about the disease and it is their desire to be of assistance to others by drawing on their vast first-hand experience. The last thing anyone who is confronted with this illness wants to contend with is trying to surf through dozens and dozens of websites looking for answers for their questions. It is Rebekah and Kaye's desire to steer you towards people that can provide the answers you are seeking.
Southern Califonia Urban Wildlife Management
Will be hosting Kathleen Howe from the University of Hawaii at Hilo for an information session on Angiostrongylus cantonensis - Rat Lungworm Disease. California is now one of eight states on the mainland with verified cases of this disease and as little prepared as Hawaii was to deal with it, the mainland is at an even more critical juncture. Healthcare professionals on the mainland need to be prepared to make diagnosis and initiate speedy treatment.
Why the Sudden Increase in Rat-Lungworm Infection?
Understanding why the reported cases of rat-lungworm infections has increased begins with understanding the life-cycle of the parasite. The rat-lungworm resides in the lungs of rats or pulmonary arteries. This is where they lay their eggs. The eggs hatch into larvae and then are excreted in the rat feces. Snails, slugs, or flatworms eat the feces infecting themselves with the larvae. The rat eats another host (snail, slug, or flatworm), and the cycle starts all over again.
Sometimes humans enter the equation by eating a raw snail or slug, but most of the time when they make their way to produce. While most cases have occurred in parts of Asia, the Pacific Island, the Caribbean, and Africa, it has been seen in other parts of the world, such as Hawai'i. Infections in other parts of the contiguous United States have been rare and under specific circumstances. For example, in 1993 a New Orleans boy became infected with rat-lungworm by swallowing a raw snail “on a dare.” Within a few weeks he became ill from the infection. His symptoms resolved in 2 weeks.
Why the sudden proliferation in Hawaii?
Parmarion martensi is a new kid on the block in Hawaii. It is a South east Asian semi slug. It gets the name of semi slug because the mollusk is too large to fit inside its tiny shell. Due to its size, it can carry at least twice as many parasites than other mollusks. They may leave behind rat-lungworm larvae in their mucus trail or even go un-noticed on vegetables not washed properly as young semi slugs may be smaller than an uncooked grain of rice. Rise in this new semi slug may be responsible for increase in rat-lungworm infections.
Eastern Hawai'i Island appears to have an extremely high prevalence of Angiostrongyliasis cantonensis infection in Rattus spp. It is also the epicenter for angiostrongyliasis in the United States. It is known that the parasite exists on all main Hawaiian Islands in a variety of intermediate gastropod host species. It is also noted that the increase in the number of human angiostrongyliasis cases has paralleled the introduction of the semi-slug P. martensi to east Hawai'i, and that the semi-slug is also heavily infected.
Now on the mainland in the U.S. and 30 other nations
On the mainland in the United States, the spread of the disease has been verified in California, Texas, Alabama, Louisiana, Florida, and elsewhere along the Gulf Coast, even northwards to Tennessee according to a 2015 study in the Journal of Parasitology. The geographical distribution of this disease has changed dramatically in just a few decades according to experts. The parasite seems to thrive best in tropical and sub-tropical climates that have large annual rainfall, but seem to possibly be adapting to cooler drier climates.
Years ago, Oklahoma seemed an unlikely place to find the parasite, but recent studies have concluded their presence in the state. Thirty other nations around the world have also been added to the list of Rat Lungworm parasite locations. Most experts concur that global warming is likely playing a role in the spread of the parasite and that other region specific viruses and diseases will also be affected. There were 18 cases reported in 2017 on the islands by the state health director of Hawaii.
Slug Outbreak at Kentucky Soybean Farms
Knowing that slugs and snails are potentially carriers of disease, health organizations are watching the current slug and snail outbreak in Kentucky. "I haven't seen a slug outbreak like this in 40 years of growing soybeans," commented a farmer in Logan County, Kentucky. Recent slug damage to soybean seedlings ranged from 5% to 95% with different degrees of feeding and defoliation. This well-known agricultural pest is known for sporadic outbreaks causing a lot of damage. The environmental conditions and the mild winter of 2016-2017 may have contributed to a large number of adult survivors and increased egg laying in 2017 along with rain, wet soil, and cloudy days.
Slugs enjoy moist, cool environments and are often found under pots, logs, and rocks. They burrow into the ground during the day and emerge at sunset to ravage crops until sunrise. More damage is observed in untilled fields, while reduced damage has been found in regularly tilled farmland. These slugs are known to attack other crops as well, including corn and lettuce. While no rat-lungworm slug related infections have been reported, consumers in that area need to take additional steps to ensure their family is protected from this harmful parasite.
Protect Your Family from Rat Lungworm Infection
Safety begins by selecting healthy foods. Choose unbruised and undamaged produce. Bacteria can get inside the damaged area and infect the bruised portions. When buying pre-cut or bagged produce, only purchase those that are refrigerated or surrounded by ice. Always bag meat and vegetables in separate bags to take home. This prevents cross-contamination and makes unpacking groceries easier when you arrive home.
Once you get the produce home, store it properly. Refrigerate all pre-cut or packaged produce as well as any perishable fruits or vegetables such as strawberries, lettuce, herbs, and mushrooms. Be sure your refrigerator is clean and reaches a temperature 40º F or below. Use a refrigerator thermometer to ensure its proper temperature. Always take all headed vegetables apart and carefully check each leaf and wash individually under potable, running water, throwing out any that have any evidence of slug feces or damage. Cooking for 3-5 minutes, freezing for 24 hours, or drying are good ways to kill the parasite. The parasite does well in wet by not in dry environments. For those green kale smoothies we recommend checking and washing the leaves and then freezing for 24 hours.
Keep fruits and vegetables intended to be eaten raw away from raw meat, poultry, and seafood. Use different cutting boards and utensils for fruits and vegetables intended to be eaten raw. If separate cutting boards are not available, wash thoroughly with soap and hot water before using.
Wash hands prior to food preparation for a minimum of 20 seconds with soap and warm water. Inspect the produce and remove any bruised or damaged spots and throw away any produce that looks rotten. Whether the produce was grown in your own garden, from a Farmers Market, or the grocery store it should be washed prior to serving. Even if you do not plan to eat the skin, the produce will need to be washed to prevent external bacteria and dirt from transferring to the surface onto the inside of the fruit or vegetable.
Use No Soap - Just Clean Water
The Food and Drug Administration does not advise using soap, detergent, or commercial produced washing materials on produce. Scrub firm produce with a clean produce brush and dry with a clean cloth towel or paper towel. Other fruits and vegetables should be washed under running water just before eating, cutting, or cooking.
If pre-cut or bagged produce is labeled as being "pre-washed" it is safe to consume and use out of the packaging. If you decide to wash labeled "pre-washed" produce do so in a manner that does not introduce cross-contamination with raw meats, poultry, or seafood. When washing garden produce it is wise to wear rubber/latex kitchen gloves.
Whether you are worried about rat-lungworm infection, E. coli, or any other foodborne bacteria or parasite, safe practices will protect yourself and your family from becoming ill.
A snail seems harmless enough unless it enters into the food chain of a rat when it consumes the rat's feces containing a round worm larvae which is infected with Angiostrongylus cantonensis. Then all hell breaks loose...
Dr. Susan Jarvi's lab, located at the Daniel K. Inouye College of Pharmacy at UH Hilo, currently has two main areas of investigation: avian pathogens and rat lungworm disease.
Kaye Howe was living in Indonesia when her son contracted Rat Lungworm Disease in Oahu. Her son Graham, was hospitalized at the Hilo Medical Center on December 26, 2008 with Rat Lungworm Disease.
Graham McCumber is the son of Kaye Howe and has struggled with Rat Lungworm Disease for almost a decade. He has written a book about his journey and more recently Graham has written his second book.
Rebekah Uccellini Kuby worked in Hawaii doing community development and poverty alleviation projects for years. She has helped to create more than 23 organic gardens — many in areas once deemed to be food deserts.
Truth: A Prayer to a Full Moon for Truth
by Graham Gabriel McCumber
Creator Book: Reaching Your Potential as a Human Being
by Graham Gabriel McCumber