So I have primary erythromelalgia and have had it since I was 9 (I’m 14 now). I have my EM in both my hands and feet. I’m on a pretty good treatment with a 10% capsaicin treatment so I only have a large flare once a year. (I get smaller flares when I take hot showers or do hiking and stuff like that) I’m ok with my EM, but my parents and grandparents keep on telling me it will go away. I have done a research report for my science genetic disorder project on my EM, and from all the documents I have seen I didn’t see any cases that went away. I just want to know this so I don’t gain false hope. Also I want to become teacher when I am old enough and I was wondering if anyone found out how to self cause a large flare, because my plan is to self cause my large flare in the summer one year then it should come back the same time each year during the summer (when I wouldn’t be working). Thx -BP
Also can EM get passed on to my kids because if it could I would plan not to have kids and just adopt.
Hi there Brooke, I am so sorry you're having to deal with EM at such a young age BUT I take a great positive in that you're doing pretty well on your treatment and seem to have a great understanding of your flaring.
I don't know the answer to you question about whether it can go away. Maybe it is more likely to wax and wane, or stay well controlled forever. What I do know is that your body still has many developmental changes to go through and they could positively or negatively affect your EM. Your knowledge and skill at managing your EM will increase as well and none of us know when the next medical breakthrough will be made that could revolutionise treatment. So my advice would be try not to worry, maintain your great positive attitude, always hope for the best and know with absolute certainty that whatever happens you will be able to deal with it. And it's certainly no reason not to follow your dreams to become a teacher.
With regard to your second question, you say your EM is primary so I take from this that you know it is caused by a changed gene. This change can happen spontaneously or can be inherited so, potentially, it could be passed to your children. I think, though, by the time you are having your own family many years in the future much more will be known about not only the genetics of EM but all other diseases causes by faulty genes. It is one of the most active and fascinating areas of medical research and one which I'm sure in the future will change the outcomes for many genetic diseases. Do your best not to sweat this question .... there are many, many other variables which can affect whether you have children of your own or not.
Kindest, Jules
Hi Brooke, I totally agree with what Jules said about the research going on into genetic diseases. There have been major breakthroughs with other illnesses so why shouldn't EM be one of them soon! Did you know of any of your ancestors having the same problem? Very often genetic diseases tend to skip a generation and if that was the case then any future children of yours might well not be affected. Also, though it may be a heart breaking thing to do but they may well be able to check for a faulty gene in the fetus at an early stage giving you the option of aborting as happens now with Down's Syndrome. Sometimes nature takes care of things e.g. my husband's mother and my mother both had bifida babies and I couldn't have children and I have often thought that it was nature that was saying I shouldn't be able to have them.
I have read that there is no cure, just control of symptoms, but again that's now one never knows what's round the corner. We all have to keep hoping that one day someone will find a cure or better ways to control the symptoms.
I hope you manage your dream of becoming a teacher.
Sheltielife I am the first person in my family to have erythromelalgia. For both of you who responded thank you!!
Well that sounds optimistic that you are the first one in your family to have EM, maybe many generations prior to the ones you know. I don't know about you, but I don't know the medical history of my family further back than my grandparents. There is a cause of death on death certificates, but very often the cause is secondary to something else e.g. my dad had an operation for an aorta aneurysm but the cause of death was pneumonia the certificate said nothing about his aneurysm. Many years ago I worked in the Cemetery and Crematorium Dept of the local council and had to check on death certificates prior to the funerals and very often the cause of death was secondary.
There is so much time between now at your age Brooke and the time when you might be thinking of having a child:). As Sheltielife said, there is much research going on into EM and pain relief from which you may be able to benefit by then.
On the subject of adoption to avoid inherited diseases: I have three grown-up children, one of them adopted, partly but not solely to avoid a genetic predisposition to kidney disease suffered by the others from infancy. Growing up she always used to say, “Isn’t it funny mum that we have all the same aches and pains and problems”. My other daughter was recently diagnosed with inherited Ehlers-Danlos Syndrome which explains many of the problems I too have had since childhood, but my adopted daughter has the same symptoms and much worse, as do two of her children, and clearly has a more severe case of EDS than we do, though none of us had heard of EDS a year ago.
It sounds an unlikely coincidence but a doctor at a haematology clinic told me of two members of one family who developed Polycythaemia Vera around the same time - but they were husband and wife and otherwise unrelated.
I have to wonder sometimes, Nel, whether these connections are somehow (and I have no idea how) less than random, somehow more than co-incidences. We have a member on another BF's community who is a statistician, his adopted son's daughter has the same rare condition as her grandfather ..... he worked out the statistical likelihood of this happening by chance. I can't remember the number but it was 1:something with a great many zero's! I guess you've probably checked out the EDS community, Nel?
I also just want to mention to Brooke about epigentics. This is the mechanism by which chemical signals can switch genes on and off without altering the DNA structure. It is a normal process in babies and growth, which can be altered by diet and chemicals for up to several generations. It is a fascinating area of research and I'm sure one which will benefit her generation and that of her children. I think, Brooke, there is lots to be optimistic about in your future :-)
Off topic but I have known some amazing non medical coincidences like two of my neighbours who encountered each other at a little known place in New Zealand, neither of them knowing that the other was out of England - one of them a youngster working there following a gap year and the other her one time Brownie pack leader on holiday.
We were on holiday once in Devon in a shop discussing a present we could take back for a neighbouring family. The shopkeeper heard us and said he had been searching for a cousin with that surname and it turned out he and the children’s dad were indeed long lost cousins.
Another neighbour couple were on holiday in India, off the beaten track, and bumped into a couple they had known since their kids were little, who had reached India in a round the world post retirement trip of a lifetime. Again neither couple knew the other was abroad let alone in India.
I bet other members could come up with more amazing coincidences.
As Jules will confirm between us we have found an incredible number of coincidences between the two of us!
I actually have relatives in my family with other genetic disorders. From what I have found out my great grandfather worked in a nuclear power plant, he died of some sort of cancer. My grandpa on the same side devolved a hole in his heart, then my dad (same side of course) has Arnold–Chiari along with like 5 other things relating to that. Then there’s me with erythromelalgia.I included a text cut out between me and my dad explain what I just explained (I was doing a genetic research project on EM)
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Nuclear power terrifies me! I am well aware of all this about climate control but there are limits. I am not sure things are safe enough now, especially at a time of terrorist attacks. Let's face it where is going to be a favourite place to attack should things escalate, I would place a bet on a nuclear power plant. Of course, there are also the problems that asbestos caused. Of course years ago people didn't know the damage that things could cause. I worked in a lab for the first 6 years of my life using horrible chemicals. One of them was pyridine and I found out later that it can prevent women having children and I never could have children. So, who knows what other things these chemicals have caused.
There sure are .... and I've not yet had chance to tell you, sheltielife, of the one we've unearthed today ..... our shared dream to have a hot air balloon ride one day :-)
sheltielife said:
As Jules will confirm between us we have found an incredible number of coincidences between the two of us!
That is a lot going on in one family Brooke, you have all our support. Does your dad know that we have a Chiari support group? He's very welcome to join us .... if he puts in his application that he's your dad I'll welcome him in straight away. There is a link from the main EM page.
Brooke Price said:
I actually have relatives in my family with other genetic disorders. From what I have found out my great grandfather worked in a nuclear power plant, he died of some sort of cancer. My grandpa on the same side devolved a hole in his heart, then my dad (same side of course) has Arnold–Chiari along with like 5 other things relating to that. Then there's me with erythromelalgia.I included a text cut out between me and my dad explain what I just explained (I was doing a genetic research project on EM)
OK when and where are we going on this hot air balloon ride Jules!
I think we need to put our thinking caps on. I quite fancy sunset over Bedruthan Steps myself.
sheltielife said:
OK when and where are we going on this hot air balloon ride Jules!
Well, I can manage that it's only a mile away!
Jules G said:
I think we need to put our thinking caps on. I quite fancy sunset over Bedruthan Steps myself.
sheltielife said:OK when and where are we going on this hot air balloon ride Jules!
Yes, it can go away. My sister had and it is gone. I have also, but still there !
Nice to know that sometimes it can go away. I am convinced that the more research is done they will find if not a cure something to relieve the symptoms. The good thing about being here is that we are able to make more people aware of EM as so many doctors have never even heard of it.
How did it go away for her ?