What is LCHAD?
Short Answer:
LCHAD is a rare metabolic disorder that prevents the body from using fat for energy. The treatment is a low fat diet and eating often.
Many people have asked me if you outgrow LCHAD or if LCHAD can be cured. The answer is no on both counts.
LCHAD is an autosomal recessive disorder which means two abnormal genes are passed to you from your parents (1 from each parent) . You cannot “catch” LCHAD, it is inherited.
Long Answer:
“Long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency is a rare condition that prevents the body from converting certain fats to energy, particularly during periods without food (fasting).
Signs and symptoms of LCHAD deficiency typically appear during infancy or early childhood and can include feeding difficulties, lack of energy (lethargy), low blood sugar (hypoglycemia), weak muscle tone (hypotonia), liver problems, and abnormalities in the light-sensitive tissue at the back of the eye (retina). Later in childhood, people with this condition may experience muscle pain, breakdown of muscle tissue, and a loss of sensation in their arms and legs (peripheral neuropathy). Individuals with LCHAD deficiency are also at risk for serious heart problems, breathing difficulties, coma, and sudden death.
Problems related to LCHAD deficiency can be triggered by periods of fasting or by illnesses such as viral infections. This disorder is sometimes mistaken for Reye syndrome, a severe disorder that may develop in children while they appear to be recovering from viral infections such as chicken pox or flu. Most cases of Reye syndrome are associated with the use of aspirin during these viral infections.”
Retrieved from http://ghr.nlm.nih.gov/condition/long-chain-3-hydroxyacyl-coa-dehydrogenase-deficiency on 5/2/2011
Living with LCHAD 
My mother had LCHAD, and she died when she was 32….I am only twelve without a mom.
Hi Brenna,
That is horrible. I’m so sorry to hear about your mom.
iv got lchad..
OMG. Are you the only sibling?? How are you doing now? Losing a loved one is NEVER easy and I am deeply sorry for your loss. I lost my mother when I was 13 to Cancer. It’s been 40 years and lost my beloved 4 years ago to Cancer as well…Both seems like just yesterday. Please email me if you ever want to talk or neeed someone to just listen.
One of my college friends has LCHAD. I never new much about it. Only now I realize how dramatic this disease is. I am truly sorry for every one with LCHAD.
God smiles on you!
It can be hard a times. We try to remain optimistic since for the most part it is a manageable disease.
My son James has LCHAD, he is 29 years olds. Your story sounds so similar to what we went through in 1985! our Initial stay in the hospital was over three months. James continues to struggle to keep his condition under control and often has problems with high ammonia levels , this is usually presented by nausea and vomiting. He is also legally blind, some with this disease do not become blind but for James he had vision problems that were diagnosed at the age of 9. James is a great young, resilient young man! So blessed to still have him in our lives!
I have 2 granddaughters
age. 3 and 23 months have LCHAD diagnosed at birth by the new born tests. They lived on monogen or their first year of life and had no illneses until foods were introducedthey are on a strict low fat diet. The 3 year old was only hospitalized twice.the23 month old once. They are seen regularlly at childrens hospital philadelphia the metabolic disease section.there is only one other child currently with lchad.does any one know what ethnic group is most affected We think its form the viking side norwegian my sonand german my daughter.on family research we have not found any other relatives effected.l
It seems to be mostly European descendants although it certainly isn’t limited to that.
my daughter is 12yrs and she has lchad, i know what you are going through, i have brought her up on my for 12 yrs, it is not very nice to see yr children sufer
Hay i have lchad and my parents kicked me out 2 years ago i am 18 now and live in Australia where i was born why are these people dieing of lchad i don’t feel like dieing in the next 20 years so if anyone can tell me why call me (removed) or email me at (removed)
Hi Rory,
I hope things have improved for you. I recommend you see a clinical molecular geneticist who can help you manage your LCHAD. Stick to your diet/plan and should have a good outcome.
I have lchad
Welcome!
How much mct oil per day do adults with lchad consume my geneticist said thirtty percent which is 45g but the dietician I saw said 1tbsp and 55g fat do any of you use butter she said to use butter thought it was lct can the total amout of fat be higher I have had up to 9 tbsps mct oil can you give glucose tabs to get more carbs or prevent a crash I was on the mct oil keto diet when taking the 9 tbsps mct oil is coconut oil safe to use I was diagnosed when i was on the mixed keto diet 1/2 lcts and 1/2 mct very low carbs high protein
Personally I’d probably avoid glucose tabs and instead up for a low fat/high carb snack. I’ll let others respond on the adult/MCT question. However, I’d definitely follow the advice of your medical team versus advice you get on the internet 🙂
Hi my name is kirrilie Napier and I have a sister named Ashlee Napier she is 13 turning g 14 on April the 23 and she has Lchad and I would like to know more about it I would like to know the effects of it like heart attacks and go I g blind that kind of stuff cause my mum or dad won’t tell me plz email me on (email removed) plz asap thank you
Kirrilie.Napier
Hi Kirrilie,
Sorry it took me so long to respond to a question you asked on my site about heart attacks and blindness related to LCHAD. These are definitely long term concerns for people affected by LCHAD.
As far as blindness goes the latest thinking on that is that by managing LCHAD and preventing episodes of muscle breakdown you can delay or prevent issues with the eyes. I recommend you look at the research done by Melanie Gillingham at Oregon Health. She has done the most research that I know of on the subject.
http://www.ohsu.edu/xd/education/schools/school-of-medicine/departments/basic-science-departments/molecular-and-medical-genetics/people/primary-faculty/melanie-gillingham.cfm
An occasional checkup by a cardiologist is something that anyone with LCHAD should have. They can monitor for any heart related issues. Again, adherence to a low fat diet and avoidance of fasting should delay if not totally prevent these issues.
This so hard to understand I have 2 beautiful grand children that have this L Chad I pray for a long healthy life for them, I hope we keep learning more and cn do more for these children with L had
It is scary at first. You posted this a while back. I hope that things have settled for you. LCHAD is manageable so you should expect the same for your grandkids as you would any other kid (with some restrictions and boundaries).
Hi, I’m from the Czech Republic and i have LCHAD…I’m 23 years old
Welcome!
Iv been living with lchad for almost 30 years. I eat whatever I want and drink on the regular. I feel fantastic all the time..could I have been misdiagnosed?
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