Hereditary Multiple Exostoses blog

Multiple Exostoses (HME/MHE/MO) is a rare bone condition in which people develop multiple benign (noncancerous) bone tumors called exostoses. On this blog you find stories, tricks, quotes and many many more! Share us your HME story, tricks, how you live with hme etc. Raise the awareness owner: Naziha Co owner: Kaya

[fuwaprince]

US Helplines:

Depression Hotline: [phone]

Suicide Hotline: [phone]

LifeLine: 1-800-273-8255

Trevor Project: 1-866-488-7386

Sexuality Support: 1-800-246-7743

Eating Disorders Hotline: [phone]

Rape and Sexual Assault: 1-800-656-4673

Grief Support: 1-650-321-5272

Runaway: 1-800-843-5200, 1-800-843-5678, 1-800-621-4000

Exhale: After Abortion Hotline/Pro-Voice: 1-866-4394253

Child Abuse: 1-800-422-4453

UK Helplines:

Samaritans (for any problem): 08457909090 e-mail [email protected]

Childline (for anyone under 18 with any problem): 08001111

Mind infoline (mental health information): 0300 123 3393 e-mail: [email protected]

Mind legal advice (for people who need mental-health related legal advice): 0300 466 6463 [email protected]

b-eat eating disorder support: 0845 634 14 14 (only open Mon-Fri 10.30am-8.30pm and Saturday 1pm-4.30pm) e-mail: [email protected]

b-eat youthline (for under 25’s with eating disorders): 08456347650 (open Mon-Fri 4.30pm - 8.30pm, Saturday 1pm-4.30pm)

Cruse Bereavement Care: 08444779400 e-mail: [email protected]

Frank (information and advice on drugs): 0800776600

Drinkline: 0800 9178282

Rape Crisis England & Wales: 0808 802 9999 1(open 2 - 2.30pm 7 - 9.30pm) e-mail [email protected]

Rape Crisis Scotland: 08088 01 03 02 every day, 6pm to midnight

India Self Harm Hotline: [phone]

India Suicide Helpline: 022-27546669

Kids Help Phone (Canada): 1-800-668-6868

FREE 24/7 suicide hotlines:

Argentina: 54-0223-493-0430

Australia: 13-11-14

Austria: 01-713-3374

Barbados: 429-9999

Belgium: 106

Botswana: 391-1270

Brazil: 21-233-9191

China: 852-2382-0000

(Hong Kong: 2389-2222)

Costa Rica: 606-253-5439

Croatia: 01-4833-888

Cyprus: 357-77-77-72-67

Czech Republic: 222-580-697, 476-701-908

Denmark: 70-201-201

Egypt: 762-1602

Estonia: 6-558-088

Finland: 040-5032199

France: 01-45-39-4000

Germany: 0800-181-0721

Greece: 1018

Guatemala: 502-234-1239

Holland: 0900-0767

Honduras: 504-237-3623

Hungary: 06-80-820-111

Iceland: 44-0-8457-90-90-90

Israel: 09-8892333

Italy: 06-705-4444

Japan: 3-5286-9090

Latvia: 6722-2922, 2772-2292

Malaysia: 03-756-8144

(Singapore: 1-800-221-4444)

Mexico: 525-510-2550

Netherlands: 0900-0767

New Zealand: 4-473-9739

New Guinea: 675-326-0011

Nicaragua: 505-268-6171

Norway: 47-815-33-300

Philippines: 02-896-9191

Poland: 52-70-000

Portugal: 239-72-10-10

Russia: 8-20-222-82-10

Spain: 91-459-00-50

South Africa: 0861-322-322

South Korea: 2-715-8600

Sweden: 031-711-2400

Switzerland: 143

Taiwan: 0800-788-995

Thailand: 02-249-9977

Trinidad and Tobago: 868-645-2800

Ukraine: 0487-327715

(Source)

[differentbutstillthesame]

I recently had some bad news regarding my Chronic illness (Hereditary Multiple Exostoses) and I’ve been trying to digest it on my own. Everybody is pushing me to talk about it and I just don’t want to talk about it. I just want to forget about it. I just want to pretend it didn’t happen. At this moment I just want to be left alone.

[multipleexostoses]

I posted this not so long ago on my private tumblr.

~ Kaya 🖤

[coffiend-jackalope]

It doesn’t have to be malicious to be ableism.

When you say “Aww” when you hear of someone doing something for a disabled person, that’s ableism.

When you feel inspired because you saw a story about a disabled person going on with their life “despite their disability” and you’re able bodied, that’s ableism.

When a parent of a disabled child says their child taught them so much about life and what it means to live, that’s ableism.

When disabled kids are called sweet little innocent angels just because they’re disabled, that’s ableism.

[toneyspooksloud-blog]

It can also be insisting you “help,” a disabled person with something, without asking them and despite them having decided they wanted to do it for themself.

It can be offering unsolicited advice.

It can be saying “nothing is ever as bad as it seems,” or “it could be worse.”

It can be making decisions for that person without their consent, without considering their feelings or consulting them first.

It can be setting goals and limitations for that person on their behalf, instead of letting them define their dreams and boundaries for themself.

You might think you’re doing us a favor, but all you’re doing is hurting us.  Treating disabled people like helpless children, treating them like a burden, or a lesson for your own personal growth, treating them like anything other than a person with feelings, no matter how good it makes you feel, makes us feel horrible.

Please, stop.

[multipleexostoses]

This is so true.

~ Kaya 🖤

[multipleexostoses]

Contact

Hey Guys,

If you have any questions about HME/MHE/MO you can always ask us through facebook, instagram or even through Tumblr! 

If you have HME/MHE/MO or you know someone who has it don’t be scared to add us or ask questions!

And if you don’t have HME/MHE/MO or you don’t know someone who has it doenst mean that you can’t add us!

- Kaya & Naziha

[multipleexostoses]

This still applies!

~ Kaya 🖤

[multipleexostoses]

I saw this somewhere online and I took a screenshot of it. I can’t remember from where I got it, so the credit goes to whoever wrote this. I want to thank this person because this is one my life quotes. I used to be and still am very insecure about my scars but Starting tomorrow I’m going to take a picture of every scar I have and post it on here. Because I know I’m not the only one who feels like this about their scars. I’m starting to accept them. Every morning I try and make sure I look at my scars while telling myself that I’m beautiful, that my right arm is beautifull that both of legs are beautiful. That even though I can hardly walk ( I will explain in another post ) that I’m still beautiful and worthy of my love. My insecurity started because when I used to go to school I got really badly bullied. They told me I was ugly, my scars were hideous and I should cover them. When I used to walk they made fun of me and even copied my walking while laughing. I used to ( and sometimes still ) walk in a really bad X shape. They even made a competion to see who could walk like me. When I had my operations on my leg and after I recoverd I went back to school they pressured me to show my scars and when I did they said ‘Ew, I wouldn’t live with that on my legs’ ( but then in Dutch ). I will make another post about how I was bullied and how it made me the person I am now. What I’m trying to say is I’m learning to love myself again which means I have to learn to love and accept my scars. Everyday I cry when I tell myself I love me when I look at my scars. I love you guys. Don’t forget you are beautiful and your scars are beautiful too!

I love you!

~~ Kaya 🖤

[multipleexostoses]

Hey guys!

I know it’s been a long time we posted on this. Life’s been pretty hard. We’re both busy with school and going to the hospital. Now we have some time during the pandemic. I hope everyone is safe and healthy ( as you can be ). I promise from now on I will post more even talk. I’m even going to make an email. Specially for you guys that’s alone in this time. Or just feel alone. We are here for you. We love all of you. If you want to talk about MHE or just any other illness We are here for you. Or if you just want to talk we are here for you! I’ll try and make the email against tomorrow because we do live in Belgium and the time difference is different. Currently it’s 00:30 here. I will even give Naziha the info of the emails so she can talk to you guys too. ( she lost her password and everything of this tumblr ).

I hope all of you are happy, healthy and painfree!

~~ Kaya 🖤

[staff]

Tumblr,

As you’re probably aware, the coronavirus disease, or COVID-19, has now been found in countries all over the globe. This is an understandably disconcerting moment for many, but there are steps we can all take to help mitigate the effect on our communities.

COVID-19 is spreading, but misinformation and disinformation are spreading even faster. The most responsible thing you can do is protect yourself from both the disease and false information. Being prepared with facts and data instead of assumptions and fabrications will help inform how you can best prepare for COVID-19.

Here are some resources you can trust:

WHO provides daily updates surrounding COVID-19’s spread, infection rate, and general influence on our society. Their latest update given on March 3, 2020, details that there is a shortage of personal protective equipment for healthcare professionals. They also provide a very handy FAQ section, where you can learn more about how to protect yourself and your community. 

Every day Worldometer updates its website with the number of confirmed COVID-19 cases in each country that has been affected. Worldometer has been rated one of the best free reference websites by the American Library Association, and for good reason: it lists every single one of its regular sources here, and lists the source of every COVID-19 update at the bottom of the COVID-19 page. 

Your local health department will often have the most up-to-date information specific to your immediate area, including how to proceed if you believe you may be showing symptoms of the virus. If you live in the United States, you can find the contact information for your health department by visiting the National Association of County and City Health Officials (NACCHO).

There’s another thing about this news that a lot of places are not talking about: the toll on one’s mental health, especially if you are someone who struggles with anxiety. If you find your concerns about being prepared are crossing a line that affects your mental health, please consider reaching out to a loved one who can guide you to help, a mental health professional, or an organization set up to help those in need.

Here are a couple of organizations you can trust:

Crisis Text Line is free, 24/7 support. Just text 741741 from anywhere in the United States. The Crisis Text Line will connect you with a trained Crisis Counselor. 

National Alliance on Mental Health (@namiorg) offers free support and resources for those who are struggling. NAMI can be reached Monday through Friday, 10 am - 6 pm EST at 1-800-950-NAMI (6264) or by email at [email protected].

Take care of yourselves, Tumblr. Wash your hands well, practice keeping a safe distance from others, only wear a mask if you believe you are sick with COVID-19 symptoms and could infect others (or are immunocompromised yourself), and remember to fact check everything that you see. Head on over to @world-wide-what for a refresher on what fake news looks like and how it spreads. Pass those tips onto others when you see them accidentally spreading false information. 

<3 

[multipleexostoses]

You are brave!

~ Kaya xx

[multipleexostoses]

~ Kaya x

[multipleexostoses]

Tip!

When I have pain, doesn’t matter where I always take a very hot shower or bath. When the pain is too much I also use a hot pack. ( and of course I take some painkillers )

Lots of love

~ Kaya xx

[multipleexostoses]

Update!

Hey guys!

As you already knew, I had an operation on my knee on the 27th of August.

The operation went well, there were some complications but I’m fine now. Instead of taking just the Exostoses (which by the way was a bening tumor. The professor send it to the lab to make sure it wasn’t a malignant tumor) they also took some cartilage.

It’s the third time they operated on the same place. Because the tumor just keeps growing there. But this time they went really deep to take the Exostoses away. They even made my bone (the one where the Exostoses was growing on) back smooth.

The revalidation is going okay. Because they went deeper this time to cut the bone, I also have more pain. In the start I could even stretch my leg or bend my knee. So I had to hold it in a special way. I had to practice to support on it which really hurt. Thank god they gave me some morfine. When I go out I took the wheelchair but inside I had to learn to walk with crutches which really hurted my arms.

But I’m happy I did that because now I can walk a little without my crutches and I can do the stairs. Slowly but I can do it! Without crutches! I’m very proud of that.

On the 13th of September, so last week they took my stitches out. Which hurted really bad because they were grown together in to my skin.

The only bad thing about this is that the scar is really ugly and it’s still a little bruised. And I’m very insecure about my scares I rather hide them than show them. But I’m learning to accept it because they are apart of me. But right know I still feel more comfortable to hide them.

Anyway good news is I’m stating school tomorrow! So on the 20th of September. And I’m really nervous! I let you guys know how it went!

My next appointment to see the professor is on the 18th of October!

Thanks for reading!

I hope everyone has a pain free day!

Lots of love

~ Kaya xx

[multipleexostoses]

I will update tomorrow about how my operation went and how the recovery is doing and my doctor appointments!

But I just want you guys to know this. I saw this on the internet and I had to post it on here!

I hope everyone is having a pain free day! And hopefully you guys are alright!

Lots of love

~ Kaya xx

[multipleexostoses]

The doctors finally found out from where my pain in my back comes from. And I never ever expected this news. But after 2 years of complaining of pain in my back. After multiple pictures and scans they finally saw where the pain is coming from. I have severe arthritis in my underback. The doctor himself was really shocked by this news. I was really shocked. I was really down when I heard it. I didn’t know what do, or what would happen. I have to be really careful now with what I’m going to do. I can’t do any heavy sports. I have to make sure I don’t overdo it. And I’m still growing so I’m problaby going to suffer more with pain. But I’m still fighting.

Anyway I just want everybody to know that I’m going to get a operation on my left knee on the 27th of August.

I’m sorry that we’ve been so offline these past months, but I’ve been litteraly these past months nearly every week to the doctor or hospital!

I’ll keep you guys updated about my operation!

Thank you for reading!

- Kaya x

[multipleexostoses]

Rant

Soo I recently just quit school and I am searching for a different school so that I can study on my own. Not many of you know but I’ve got a chronical disease called multiple hereditary exostoses. Which basically means that I grow extra bones everywhere. I go to the doctors atleast 3x a month and have atleast 1x a year an operation. School just ended where I live (which is Belgium) and I couldn’t go to school that much because of my pain and I had to go every week to the doctor/hospital. I’m also on morfine plaster (keep in mind that I’m only 19y). I’ve been absent from school from the 3rd week of September. (School in Belgium begins the 1st of September till 30 June). The school never called me not even once to see how I’m doing. They never even send a message to me about my schoolwork. Never asked when I’m coming back. And yesterday I got a message from a classmate saying ‘it’s not fair that they(=school) failed you this year, I’m sorry’ and I was shocked apparently school can tell other people and the whole class that I failed but cant even pick up the phone and call to tell me? My mum send the teacher a message and she basically said “that it was my fault because I wasn’t motivated enough”. I wasn’t motivated enough? I’m sorry but everyday I’m in pain and I was nearly everyday by the doctor or in hospital. I have spend this year more in a hospital/at doctors than at home. I’m sorry that I couldn’t attend class while I was having revalidation so I could even walk. Because a couple of months ago I couldn’t even walk from the pain. So what I learned and basically what I mean with this rant is. I NEVER FAILED SCHOOL! SCHOOL FAILED ME!! The education system failed me! And I’m pretty sure I’m not the only one. This education system is not really suited for students that can’t go full weeks to school, that can’t go everyday because of an illness. If you went or still going through this just know that YOU NEVER FAILED SCHOOL! School and the education system FAILED YOU!!!

Sorry that this rant is so long, I just had to get this of my chest.

Love Kaya! X

[multipleexostoses]

I grow bumpy bones, what is your superpower?

HME, MHE, MO warriors

[multipleexostoses]

One day it wouldn't hurt so much as it does now I promise -Naziha

[multipleexostoses]

Updates

Hey guys! Sorry for being unactive but I will give you some updates from me and Kaya I had a hipsurgery (again) 2 weeks ago for my hipdysplasia which is caused by the HME. I’m recovering very well and I’m now on psychical therapy, in 2 weeks I have my check up and then we will discus about my knee (there is a 2cm/5 inch exostosis that is pushing my nerves etc) About Kaya she also recently have undergo surgery (2 days ago) She was discharged from the hospital yesterday. They removed a big exostosis in her upperarm. My prayers are with her. Again sorry for being unactive Hope you will have a (less) painfreeday!

-Naziha