What to do with Steatocystoma Mutiplex?

[Shinju]

Hi everyone! Need a little help here. I am currently diagnosed with Steatocystoma Muliplex. I have multiple small lumps in my arms. Before, I thought these are just ordinary lumps. Back then, I was a bit "chubby", I could hardly feel them, but today I can say, I'm getting skinny so I can feel everything under my skin. Small lumps. A lot of them underneath my skin. My diagnosis worries me a lot. They said this condition is inhereted but as I checked my family and relatives, they don't have such or we simply don't have history with this kind of condition. To those with the same condition as me, please kindly share to me what are the things I need to do? What are the possible actions to prevent these from spreading? I am so worried. I hope you can help me with this guys. Thanks ahead. Godbless everyone!

[Dalidali]

Hi I think I have the same thing am going to see if I can be diagonised I've had cysts on my head since 17 and last year got them all over arms felt like there was something in me that needed to get out I have one on back of my neck now . No one in my family either but I have an autoimmune disorder that is inflammatory and wonder if it set of the serbaceus cysyts . It's fairly shaming to have these bumps u have successfully got the. Out if scalp before but you have to get the capsule and the chalky thing inside says it relates to keratin 17 imbalance . I've read lately that taking bee pollen internally can help. . I live in nz and at nearly 40 want to get this under control and some idea too of how to cope . Rather scary I wear my hair tied up as suffers hair loss where cysts grew and that effects my self confidence. I've been googling And reading lots of articles etc .. really glad there is this page so we are not alone . Went to Drs last year and he made me feel terrible and like I was paranoid told me I had infected hair follicles . But the. I was in hospital over night with intense stomach pains . I think the cysts can be internal as well . If not heriderty can come from trauma to skin and I think it may be immune and stress related . Seems we have it for life starts in teenage hood .

[Shinju in reply to Dalidali]

Hello there Dalidali!

Thank you for responding to my post and for taking time sharing your condition as well.

healthunlocked.com/api/redi...

Please take a look at that page, I'm sure it'll help you find answers to your questions. I, too, have joined the group, and thank God, they're very responsive.

[amir1992h]

Shinju good afternoon.

I too was diagnosed last year, I first noticed bumps on my arms when I was 18 and then they spread further. Mine was a sporadic mutation, like I think yours was too. No one else in my family has this condition either.

I first want to let you know that even though the condition is a rare disorder, you are not the only one coping with it. There are communities who have found ways to manage the condition, even though it is difficult at times.

I want you to look at this Facebook page:

facebook.com/groups/1473096...

There you can connect wit people who are also in the process of finding new ways of managing SM and they can give you lots of advice on what things to avoid in diet that may help perhaps. For me, I stay away from any foods with high GMO influence, red meats, and dairy especially. You can find alternatives to all of these, like almond milk for example.

Additionally, specialized dermatologists can sometimes remove cysts for you.

If the entire cyst wall is removed, that targeted cyst has been known to not reappear for as long a a year if done properly.

New medical treatments are being developed which are not guaranteed, but may help with this condition in as early as 2018 or 2019. Some are in phase 3 clinical-trials, but here is a list to share about the products & companies:

Product or company names & links:

- Winlevi: cassiopea.com/.../product-p...

- Novan "SB204": novan.com/pipeline/sb204/

- Botanix: "see products 1503, 1308, & 1204" botanixpharma.com/products/

- BBI-3000: brickellbio.com/bbi3000.html

- Dermira: dermira.com/pipeline/olumac...

____________________________________________________

Some additional details:

*Dermira is in phase 3 clinical trials and is under evaluation for long-term safety efficacy to patients as of January 2017.

*For BBI-3000, I'm not sure about. Their website says that it was in the pre-clinical phase of development in 2014.

*For Botanix Pharma, to me they have some very interesting concepts, but I could not find what stage of development those were in from their website.

*Novan is still under evaluation. Clinical Trials.gov says it's still ongoing and has last been verified in January 2017

*Winlevi's products are in phase 3 clinical trials. They expect data feedback at the earliest by the middle of this year, 2017.

The condition for SM is triggered by a KRT7 or 17 mutation which causes sebum to be over-produced in your sebaceous glands. This leads to cysts being formed in the dermis & epidermis. Even though there isn't a reliable method of correcting this gene just yet, there are methods being developed to counter-act sebum over-production as seen above. In conclusion, if these methods worked, they could prevent the rate of appearance of SM cysts for those diagnosed with Steatocystoma Multiplex in ways that haven't been done before.

Shinju, stay strong and try not to stress too much.

I too know how you feel.

There are plenty of people also dealing with this, but also living normal lives; as well as many who are finding ways to treat their own conditions.

But I do believe help is on the way, and that you should at least connect to some others managing the condition as well.

All the best

[Shinju in reply to amir1992h]

Good day Amir!

I would like to sincerely thank you for taking time reviewing and responding to my post. I've already joined the facebook group you recommended above and some of the good members there start giving me pieces of helpful advice and some of my questions were already answered. Thanks to you.