HNPP · Physical Health

Can diets help with HNPP symptoms?

apple hnpp hereditary neuropathy diet

Having a neuromuscular condition like HNPP can pose some unique challenges to weight loss, especially when designing an exercise and diet routine. If you have HNPP, moderate exercise is usually best, especially when combined with a healthy diet. One of the challenges facing HNPP sufferers is the fact that muscles can take longer to recover from exercise with the condition.

Because a person with HNPP can’t exercise as hard as someone without it, it is important to watch your diet. The foods that you eat need to do more than just fill you up. Everything you put into your body needs to do double duty, whether it is increasing metabolism, lowering cholesterol, or helping your muscles recover faster after a workout.

Disclaimer: Please check with your doctor or practitioner before starting a new diet. 

Stephanie Sacks, a nutritionist and culinary chef, worked with Hereditary Neuropathy Foundation founder Allison Moore, who suffers from the sister condition of HNPP called Charcot Marie-Tooth syndrome, in order to improve her health. In July 2016, Sacks began to change her diet and determine if food could be “thy medicine” for those living with CMT.

Moore followed a specific menu that was created for her by Sacks – a “nutrition prescription” that was the result of collaboration with an “integrative functional” dietitian colleague. It included a meal plan with supportive supplementation, and after two months Moore claimed there had been an improvement. Her blood work also reportedly improved, from cholesterol to triglycerides and liver function.

You can view the interview here.

According to Sacks’ website, the first phase of the diet looked like the following:

  • 80-90% whole foods diet (organic as often as possible)
  • Neuro-protective foods including healthy fats like avocado, coconut oil, extra virgin olive oil, almonds
  • DNA-protective foods such as broccoli, cabbage, kale, radicchio, berries, matcha tea (potentially slows or reverses damage of DNA)
  • Naturally nitrate-rich foods like beets and chard to enhance blood flow and improve vessel elasticity
  • No gluten (it can be pro-inflammatory for many)
  • Limited dairy (same as above)
  • Limited starchy carbohydrates like grains and beans
  • Nothing artificial, from preservatives to sugar to flavors to dyes
  • Limited refined sugar
  • Little to no alcohol

The crux of the diet is clean eating, which is something most people without the condition can even embrace.

What kind of diet?

A nutritious diet that is right for you will largely depend on your age, size, gender, lifestyle, eating and food preferences and your overall health.

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As CMT UK recommends, the person to see is a registered dietitian – they may not know about the condition, but they can approach the right people to create an appropriate plan. Here is what a healthy diet looks like, according to the organisation:

  • Eating at least five portions of fruit and vegetables every day
  • Eating only a moderate amount of “simple” carbohydrates like sugar, processed flour, potatoes, pasta etc. Replace these with “complex” carbs in fruit, unprocessed grains (brown rice and pasta etc).
  • Eating plenty of proteins – meat, fish and pulses – remembering to remove the skin from chicken and excess fat from meat and avoid frying
  • Having three portions of dairy foods every day. (A portion is about 1/3 pint of milk or a small pot of yogurt, or 25g of cheese.) Where possible choose reduced fat versions, like semi-skimmed milk and cottage cheese for example
  • Keep fatty and sugary foods to a minimum
  • Eat as little salt as possible. The recommended daily amount is 5 to 6 grams (about one teaspoon)
  • Avoid ready-made foods, as they can contain very high levels of sugar, fat and salt.

Digestion

In some cases of HNPP, dietary issues can include problems with digestion. Those with autonomic nerve damage – which are the nerves that are connected to the internal organs – can face loss of control and functions of the body.

“I truly believe foods play a major role in both inherited and non-inherited neuropathy. I have a been gluten free for about 5 years due to a blood test result showing I had a gluten sensitivity. I believe it has slowed my rate of neuropathy progression.”

Asked on the CMT Inspire Forum

Gareth Parry, M. D, Professor and Head, Department of Neurology, University of Minnesota, spoke to Maureen Horton, creator of the original HNPP.org website. Asked if HNPP can cause a “digestive slow-down”, Dr Parry said that while HNPP doesn’t have a direct effect on the digestive system, relative inactivity imposed by the condition and sometimes the effects of medication can exacerbate the problem.

He adds: “Maintain as much physical activity as the HNPP will allow. High fluid/high fiber diet. Occasional use of laxatives is OK but avoid them as much as possible.”

Obviously, it’s important to ask a nutritional specialist to get the best results. Nonetheless, combined with physical activity, your diet can help you to reach and maintain a healthy weight, reduce your risk of further issues, and promote your overall health.

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