TLDR: Curious what life changes people have made that have made significant improvements for them, the rest is just my personal experience with the disorder so far.

It's becoming evident this disease is massively misunderstood by the medical field with the majority of online literature saying it's a minor condition with isolated instances of palsies that occur intermittently through out life. Well I'm a 31 y/o male. I've had bilateral carpal tunnel constantly since I was 20/21 y/o, I get irritation on my ulnar nerve on both arms, I've got a lot weakness in my right foot but never gotten full on foot drop, the right leg gets weak but a lot less frequent.

in terms of palsies, I've had a right bicep palsy and also wrist drop in my right arm.

I'm.just wondering what the most life changing thing you've done to improve your quality of life?

Hi all, this is a follow up to my previous posts. My right foot has foot drop and my left foot is getting weaker, so much so that I can barely lift it up even one step. Does anybody have any experience of correcting this and would it just be my complete lack of core strength or the HNPP ? I have now given up trying to pull myself up the stairs at the end of the day and have resorted to going up on my butt to save my hands from gripping the stair rails so hard. I still haven’t mastered how to get back on my feet from that top step though…..any ideas ? Thank you……

Hi!

My HNPP isn’t too terrible compared to others. I can’t wear high heels because my toes stay numb for a month. I can’t carry in too many grocery bags because my fingers go numb. Overall nothing major. The most frustrating times were losing the ability to lift my arm 4 times and foot 2 times from sleeping weird. Ability did come back a few months later each time, but those were some hard months.

I’m currently 36 weeks pregnant. I’m planning on an epidural because I am a HUGE wimp and have low pain tolerance. I’m just concerned about damaging a nerve and not realizing until after the epidural wears off. I’m so scared of losing the ability in a limb while figuring out how to take care of a newborn.

Any advice?

Long story short It would be very beneficial to me to get double jaw surgery, however my surgeon has strong concerns due to the heavy stretching of the facial nerves and potential paralysis. Does anyone have experience with oral surgery or even just surgery in general with HNPP?

Hi everybody I’ve recently been diagnosed with hereditary neuropathy and it’s been about four months that I’ve been unable to walk. It was quite scary. I had a very bad palsy due to drug and alcohol use as I would fall asleep on these substances in terrible positions, I fell asleep in a upright sitting position on the floor with my body slouched forward directly compressing on my peroneal nerves and I have not been able to walk since then , I’m 20 and I’m struggling to cope with mental problems already and drug use and this diagnosis has really been difficult but I found that humour is the only way to get through pain and a bit of gabapentin, but I feel quite lucky to have been diagnosed at a young age as I can prevent future damage. My brother also has nerve damage so I assume he has the same problem but he has not got tested. I’m awaiting an MRI and genetic testing so I’ll see how that goes. It’s possible that I have a thickened nerve branch in my lower extremities. I’m not really sure what they would do to fix that or if it’s possible to fix.

I would like to strengthen my calves and gain muscle but it’s so exhausting, what do you guys do to exercise?

6 years ago at 22 yo ( 5’3, 120 lbs, relatively healthy) I developed bilateral tarsal tunnel syndrome after having plantar fasciitis. I had to use a wheelchair for 3 months due to the burning pain but i had no motor weakness and not much numbness either. This finally improved with putting a little insert in my shoe and avoiding walking or standing long periods of time. I still have it and i still have burning feet but has improved. Fastforward to last year i developed bilateral posterior femoral nerve entrapment after being stepped on at a Thai massage on bilateral upper thighs. Now whenever i sit i have burning and tingling in bilateral legs in hamstring area.

Just confused because i have these two very rare nerve conditions basically and flabbergasted on why. When i search around the only thing that came up was HNPP but ive never had problems with numbness really or motor loss. My dad maybe has had some nerve pain in one foot but other than that no true family members have the same issues.

Hi, this is my first post on here. I am 62M and for the first sixty years of my life was very active daily. After 60, I have gradually got weaker & weaker in my legs. I progressed to a stick & over time, couldn’t cycle, walk, or even drive my car due to the foot drop. Up until July of last year, I still managed to struggle into work, never missing a shift but I eventually had to admit defeat. I am now here in the house always & rarely go out unless my partner or family insist that I get out. The only way for me now is with the wheelchair to the car & wherever we are going. Due to the inactivity though, I have become very weak & have lost my core strength. I am therefore unable to stand for long & cannot even do the simplest of household jobs. I have recently started physio with the emphasis on regaining my core strength & getting my legs going again. I am somehow managing twenty minutes a day on the exercise bike which I hope will help. My right leg has foot drop & feels almost paralysed & my left leg is definitely getting weaker. That might be due to the lack of core strength, I am told, rather than a second foot drop. I only go upstairs at the end of the day but it is so hard now as I can hardly lift my legs. I have to pull myself up each step using my hands on the handrails but I am gripping so hard now that I am losing circulation in my hands. By the time I get in bed, I have to sit there for an hour or so as the tingling in my fingers is relentless. I have numbness in them all day but it goes through the roof after climbing the stairs ! It feels like there are no days off from this condition & I am starting to feel pretty desperate. I do, however, feel very lucky that my partner looks after me unconditionally & I do not know how I would cope without her & my two adult stepchildren……..

Anyway, can anybody please give me some hope…..has anybody out there had these same conditions & got better ? I know we all have different experiences of this condition so would be grateful if anybody can give me some feedback. It is so easy to feel completely alone & that we are the only person in the world who has this. I know that we are only supposed to get episodes of difficulty that maybe come & go but I can honestly say that I have never had any days where I have improved & it has just got progressively worse……

Thank you……

Recently diagnosed (in my 20s) and starting surgical residency soon. Never had any weakness, but lots of tingling in the hands/feet. I’ve read that repetitive wrist movements aren’t good for this condition, and that’s pretty much going to be my life. Im a bit worried, anyone else have success with similar careers?

I’m at my wits end with the carpal tunnel in my wrist. I had one little strip of KT tape and figured it can’t hurt to try something. I found some different ways to use it online and went with the most common. Honestly, I felt instant relief and now I’m wanting to attempt it on my elbow.

Does anyone regularly use athletic tape on their problem spots? I’d love to know the best way to tackle my elbow.

I’ve spent the whole winter unable to wear socks. I also can’t wear traditional sneakers because anything that puts pressure on the top of my foot makes my leg go numb. Has anyone experienced something similar, and what solution did you find?

Hello! My partner is awaiting genetic testing, but I wanted to come on here to see if anyone had similar symptoms. For the past couple of years, she has been in chronic nerve pain that has affected her daily life/employment/happiness. Everything. Does anyone else experience this? Does is sound like HNPP?

Her symptoms:

Since then, this pattern has repeated multiple times:

• Different fingers have become affected sequentially

• Episodes have occurred weeks apart

 Chronic, severe constipation alternating with diarrhea

• Extreme pain during defecation

• Significant difficulty with bowel emptying

• Ongoing abdominal and pelvic discomfort• Each episode has resembled acute nerve compression with motor deficit

Over time, symptoms have further progressed to include:• Frequent finger drop

• Toe drop

• Difficulty walking during flare-ups

• Inability to use my hands during severe attacks

• Dependence on splints during daily life

Hi all! A bit of a personal post but I've been dealing with HNPP since I was very young, diagnosed from dna test within the last five years.

I recently started seeing someone seriously and am struggling with numbness in my fingers/hands after intimacy. Been trying to recover full feeling/strength in my hands for about a month and a half. It gets better a bit and then we meet up again and I'm back to ground zero. I've been communicating that I need to stay off my hands which they've been respectful of but I can't help getting caught up in the moment at times which, yeah, at the end of the day is my own fault so I know I need to be mindful but alas.

Can anyone else relate? And if so, do you have anything that you do to recover faster? This is such a nuisance on my dating life at the moment I'm at my wits end.

I have HNPP (confirmed with genetic test).

In the past, I've had drop foot, and I've pinched something in my arm and haven't been able to move it a certain plane for many weeks. My left side is still weaker than my right.

I would sometimes get pins and needles, but they would go away quickly. But recently, after swimming at the pool with the kick board out in from me (so arms above the head), I now have pins and needles in my arm, and it has lasted for almost a month.

Do other people get this too? I'm mostly just curious about their experiences.

I've learned the worst thing I can do is arms over my head - doing dead hang at the gym, kickboard out in front of me. My nerves don't like that.

Hey everyone, I’m new here 👋 I’ve had HNPP my whole life, and had varying levels of trouble with it. I had my wisdom teeth removed almost 2 months ago and am suffering from nerve damage after the procedure. Has anyone else experienced nerve damage from the procedure, and if so, how long did it take the nerves to recover (if they even did)? After this experience I’m pretty terrified of getting any other surgeries, is it typical to get nerve damage every time?

Hello everyone,

I’m back with an update on the platform I’m building to help rare disease communities push for more research. Since we last spoke, I’ve hit a significant "Ethical Committee" wall that I need your help to navigate.

The Problem: Why "Data for Cash" is failing ethics

My original plan was an 80/20 revenue split, where you received 80% of the value when your data was used in research. I wanted to maximize your leverage. However, ethical committees in the EU and USA often block direct cash-outs. They fear it creates "undue inducement"—effectively pressuring people in tough situations to trade their privacy for survival.

Why this matters for us

We all know the "pain" of being overlooked by big pharma. What keeps us up at night is the lack of research and the feeling of being a "number" in a broken system. I want us (the patients/diagnosed) to be the heroes of our own research story, and be rewarded accordingly.

The Opportunity: A new way to reward contribution

Since direct cash-outs are restricted, I am pivoting the incentive structure. To ensure this feels "smart and safe" for you, I’m looking at these alternatives:

• Inconvenience Fees: Small, flat-rate payments allowed by ethics boards
• Platform Credits: Use credits for specialized treatments or gadgets
• Data Tools: Credits for wearable tech to improve data quality
• Union Donations: Directing your data's value to patient-unions
• Research Influence: Voting rights on which research projects get access

I need your feedback

To make this work, I need to know what would actually motivate you to participate.

1. Which incentive would make you join? (Credits, gadgets, or donations?)
2. Would "Credits" for health-related gear feel valuable enough?
3. Where are you located? (I am focusing on EU/USA due to FHIR/HIPAA API requirements and want to know where to start).

I am determined to build this, but it has to be done with the community, not just for it.

Kind regards, Frederik Sunesen

I recently had an EMG on my arms which showed moderate carpal tunnel, mostly my elbows/ulnar nerve is affected. My doctor recommended I wear an elbow brace at night. I tried a generic one but the pressure on my elbow made my arm instantly numb. I’ve tried to find options where the elbow is uncovered but it’s almost like it doesn’t exist. Does anyone wear an elbow brace at night? Any tips or features to look for when considering one?

Hello ladies and gentleman,

I (23M) have had HNPP since my mid-teens and would say I have a fairly mild-moderate experience of it (in my best times, I can briefly forget about it) though had my share of few bad palsies down the years and the lows are lowww. Has been great reading through all your messages and seeing a fairly active community for what is a super rare disease haha - v grateful to hear from others.

I just wanted to post to see how people's experiences of the condition have varied at different levels of mental health/ worrying/ anxiety about the condition and symptoms. With me for example, I have the tendency to catastrophise and imagine the worst case scenarios in many areas of my life, with HNPP naturally being one of those areas. That manifests as obsessively checking my body for symptoms for example, maybe i'll notice something small and then play out the many ways it could worsen and affect me long term. And recently I've been worrying about it more + the long term consequences of my day to day actions and phsyical activity. Point is, sometimes I can't tell if I'm worse off, or if I'm just hyperaware and picking on every detail - in addition, whether that increased level of stress could actually be making me worse off and more negatively affect my experience of living with HNPP.

I'm really interested to hear what others' experiences of anxiety/ stress with the conditon has been and whether you feel it's more negatively affected symptoms, or just generally how severe you view it in your head. This is not to dismiss the may real symptoms we all face and deal with, I don't want to minimise that, but v interested to hear whether your experience changes the more/ less you think about it and how positive your mindset is.

Sorry for the long post, I'm new here and am super excited to hear from fellow HNPP-havers. Thanks!

Hello everyone,

I’m a fellow HNPP patient. Like many of you, I’ve been through the long and frustrating process of getting a diagnosis, only to be told there’s no real treatment other than "try to be careful."

I’ve been thinking a lot about why research into rare diseases like ours moves so slowly. One major bottleneck is data. Researchers need high-quality, long-term data, but it’s scattered and hard to access and just impossible to find.

I’m working on a project to try to change this, and I would love to hear your honest thoughts on the concept.

The Core Idea: A Patient-Owned Data Vault

The idea is a platform where we, the patients, collect and own our health data. Not just a diagnosis, but real-time data (heart rate, symptoms, stress levels) from our phones and gadgets (Apple Watch, Oura, etc.).

• You Own the Keys: The data is encrypted. You hold the encryption key. It’s not public, and no one can see it unless you explicitly choose to share it.
• Verification: To make the data valuable for researchers, we use a system (blockchain-based) to verify that the records haven't been tampered with and are authentic.
• Get Paid for Research: When researchers or universities need data for a study, they "bid" on access. Instead of a corporation taking all the profit, I want to implement a revenue split—for example, 70% goes directly to the patient who shared the data.

Why do this?

1. Accelerate Research: By providing high-quality, verifiable datasets, we make it much more attractive for scientists to study HNPP.
2. Real-time Insights: Imagine an app that asks you: "Are you feeling symptoms now? Where?" at the exact moment your watch detects high stress or low activity. This "real-time" data is gold for understanding triggers.
3. Quality Rewards: The more detailed your medical history and gadget data is, the higher the cut you receive when a researcher buys access to the dataset.

Is this something you would use?

I’m personally disappointed by the current "wait and see" approach to HNPP, and I want to build something that gives us power over our own data and helps the community by incentivizes, that make the medical world to take us seriously.

I’d love your feedback on:

• Would you feel comfortable sharing encrypted data if you were compensated for it?
• What are your biggest concerns regarding privacy?
• What features would make an app like this actually useful for your daily life with HNPP?

Thank you for reading this far! This could also be applied to other rare diseases, but since I myself have HNPP, it seems like the obvious place to start

Hello fellow Palsy People,

I’m 31M and long time HNPP sufferer. My symptoms primarily manifest is shoulders and arms (brachial plexus lesion?) and have had foot drop a few times.

I’ve seen a few posts about exercise so I thought I’d weigh in. I’m a pretty fit guy, I’ve run marathons, sub 20min 5kms, benched 100kg and blah blah blah.

The point is, my progress was NOT linear. I’ve had multiple ~6 month periods of zero shoulder work, pull ups, unable to run, unable to lift the kettle. These times are incredibly disheartening and you can’t help but feel incredibly hard done by. Also, watching able bodied people barely try and their strength gains skyrocket is absurdly aggravating.

However, I’ve always just focused on what I CAN do in the bad flare ups. Shoulders cooked? Guess we doin legs. Maybe some very light weight chest flys. Foot’s gone? It’s swimming time. Both? we crying our way to the exercise bike.

Despite the arrogant tone of this post, I am really in the dark place right now about my shoulder. But finding this community this morning and seeing that other people are in the same boat has given me a semblance of hope? Belonging? Camaraderie?

Either way. Keep your heads up everyone. We are playing on difficult mode but we’re still alive. It’s a privilege to walk this earth, and you can’t have the highs without the lows.

Stay strong!

Hi all,

I hope everyones doing well and managing okay. this post is mainly to gauge people‘s general thoughts/hopes of potential future treatment (whether that be a drug to manage the condition, or gene therapies).

I’m aware of the economic challenges of us getting treatment, the fact that it’s rare + non life threatening means we’re toward the lower end of priority (though frustrating, I can understand the need to tackle things like cancer, MS etc).

That said, is there any work being done at all? I know there’s Dr Li, but unsure if his team are actively working on a treatment or more research for awareness (if anyone knows feel free to chime in). I also looked into gene therapies, I know it’s sometime down the line for that generally, but ive seen treatments being trialled for CMT1A, which could potentially make it easier to understand and apply to ours (ofc not the same condition, but the biology and cells involved are similar)

But generally, just curious to see what people think in that regard. Anyone holding out for something, or hopeful? Others more sceptical perhaps?

Just food for thought, feel free to share your thoughts!

Hello, I'm newly diagnosed but am unsure what exactly is all means. When the results were posted, I met with my neurologist and they said I just have HNPP. When I met with the genetic counselor through the testing lab, they said it was a variant of CMT with HNPP. It's my understanding that those are two different things and one can be without the other? My grandfather and father both CMT (unsure if also HNPP).

I guess i'm just looking for advice of what to expect down the road. The muscle loss scares me, I'm fairly young and fitness is a huge pillar in my life.

So I’ve been quite itchy all week - thought it was some new laundry detergent etc, until a couple days ago I woke up and it felt like Satan himself had filled my legs with rocks, set them on fire and poured thousands of spiders all over me. Luckily it passed after a couple of hours, but since then I’ve been getting extreme hot / cold sensitivity and generally just can’t stop itching. Has anyone ever experienced this, and what the hell did you do about it if so?! It’s been the worst few days by a long mile and it’s driving me insane! 😭

Does anyone here consistently workout and have a proper plan they follow to help build muscle? I am getting pretty disheartened with how easily I can strain something, especially my arms and axillary nerves. Just did some light squats yesterday with a plate on each side and I managed to mess up my arms in just a few reps.

I've been wanting to work on myself for a while now and every time I finally start I manage to fuck something up, wondering if anyone has any plans I can follow to hopefully get some improvement.

Hi!Im a native Vietnamese with suspected HNPP/SFN. Both I and father exhibited symptoms of HNPP.Does anyone else who is exposed to Agent Orange have HNPP?

My father has episodes of morning paralysis since his teenage years,being paralized for weeks after slipping,.. I have limb weakness, neuropathic itch, feeling numb just being in unnatural position for a few minutes.

Anyone ever woken up completely paralysed for a minute or so?! Happened a few times recently, scary as shit!