NeedsList.com – on helping the afflicted by EB disease

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Maybe you can help. Looking for support to live with the disease:

Mepilex Transfer 20×50 (dressings and other wound care medications

Mepilex Lite 20×50

Urgotül15x20

Tubifast Green, Blue

Peha Crepp 8×4,10×4,12×4

Medicomp 10×10 (100 St.)

Octenisept antiseptic

Octenisept gel

Bepanthen 100g

Bepanthen Augen Tropfen

Epaderm

Flaminal

Sudocream

Fresubin

Multibionta

Zink Beta

Zyrtec

This is the list of standard medical applications needed for children affected by Epidermolysis bullosa (EB). This condition causes severe pain with blistering of the skin occuring with only minor trauma or friction. The items on this long list are the means needed to alleviate the pain afflicted by EB for its wound care.

I, (Svetlana Sharon-Shelly) (in the photo with twins Alexander and Ivan from Ukraine delivering the needed medical products ) am an Ireland-based volunteer helping over 25 kids with this disease and raising funds to procure the required products for the needy families, for example;

Pavel (Pavlik) Vesku (born in 1999), a boy from a Ukrainian village in the Chernivtsy region has been coping with the disease more or less his whole life. The daily treatment required for Pavlick’s severe EB is barely comprehendable. Before these medical products became available for Pavlik, his hands had already been amputated as his fingers had fused together.

Pavel EB

Pavel and his treatment:

Pavel EB

In total it takes about 3400 euro per month to have all the medical products needed for Pavlick’s treatment.

The severity of the disease in kids varies, and the amount of treatment required varies depending on the area of the wounded skin (daily bandaging is needed for all the children I am supporting). Some bandaging items from the list are provided by the state, but in the case of the Ukraine and Russia the scope of products is very limited and the amounts are minimal and don’t come close to covering the full needs of the children. That makes the financial support of others and subsequent purchase of the medical products absolutely necesssary.

You are able to help by donating to:

Svetlana Sharon-Shelly, Paypal: svemdo@gmail.com

Reference: ‘EB fundraising’ or ‘needslist.com’

If you’d like to donate via other means please contact at: svemdo@gmail.com

[1] Pavel Vesku’s support group (in russian) https://vk.com/pavlik_vesku_babochka

These are just some examples of the EB kids that need our help, whom I will be supplying the medical products for in 2019. Monthly cost of treatment shown in brackets:

Pavel Vesku, born in 1999, Chernivtsy region, Ukraine (3400 euro/mo)

Roman Bordakov, born in 2006, Novorossiysk, Russia ( 225o euro/mo )

Igor Krutous, born in 1982, Vinnitsa region, Ukraine (3500 euro/mo)

Maria Lopatkina, born in 2008, Moscow, Russia (2480 euro/mo)

Olga Khopta, born in 2005, Electrostal, Russia (3520 euro/mo)

Vlada Kirilishina, born in 2014, Kmelnitskyi region, Ukraine (2330 euro/mo)

Anastasia Podosinina, born in 2008, Novy Urengoi, Russia (3510 euro/mo)

e.g. Anastasia’s needs list for 2019 contains:

Urgotül 10×40

Draco foam infect

Flocare Infinity pack set Transition

Flocare container 0.5l with pack cup

Flocare Button Extension set

Halyard mic-key gastrostomy feeding tube 14-2.5

Dash3

Octenisept gel

Octenisept antiseptic

Hysan spray

Veleda cream

Veleda Malve

Eubos Omega 12

Gengigel

Thank you for taking the time to read this. Any and all support is greatly appreciated.

Nastia Podosinina

Nastia urgently needs supplies:

Olga Khopta

Olga was born in 2005 in Noginsk, (lives in Elektrostal) Russia and from birth suffers from a rare genetic disease called Epidermolysis Bullousa. Olga is missing the gene that produces the collagen protein that gives the human skin structural support and elasticity. In simply terms, this means that the skin of EB sufferers is extremely fragile and causes healthy skin layers to exfoliate at the slightest touch. Another term widely used is “Butterfly Children”, as butterfly wings also disintegrate when handled. A nice term for something that is anything but nice, in fact EB sufferers spend a life in constant pain where even the loving touch of a mother can cause the skin to blister. This angel is simply decaying before your very eyes from the numerous wounds and blisters that cover her little body. All mucous membranes and internal organs are affected, fingers on her hands and legs were fused together and needed surgical separation in the EB Clinic in Freiburg, Germany. This was a very complex operation and performed by specialist plastic surgeons.

Food can cause complications with her oesophagus if it is too hard or too warm, therefore special surgical procedures have been performed to widen her oesophagus.
Things we take for granted like brushing teeth needs to be done with extreme care to insure the gums are not touched, otherwise they will be become damaged and Olga will lose her teeth. So oral hygiene is a luxury for Olga and only seldom done. Olga is constantly on painkillers. The strain on the family became to much for Olga’s father and he departed some time ago.

Olga struggles every day to live. Olga knows only pain and suffers worst during the dressing of the wounds. Unfortunately, this disease is incurable, but it is possible to sooth the distress somewhat with special plasters and gauges developed for 3rd degree burn victims – these include URGOTUL, MEPILEX LITE and MEPILEX TRANSFER, which have a special silicone coating and non-stick properties. Obviously it is hugely important that the plasters do not stick to the skin. Regular bandages are therefore not suitable, they stick to the wounds and only damage the already affected area. The Russian health authorities do not provide for Olga’s daily medical requirements, the financial costs have to be carried by the family alone. These costs can only be provided by the generous donations of people who sympathise with Olga’s plight.

Weather changes caused by a new season exacerbate the situation, the condition worsens, wounds become infected more often accompanied by a constant high body temperature. Because of the amount of infected wounds, Olga could easily contract and die from sepsis.

At the moment, Olga is all out of the necessary medical supplies. Olga’s mother is forced to wash and reuse the special plasters and gauges which is not the designated procedure for application of these plasters. They are for single use only but with daily dressing changes needed, Olga’s mother has no choice.

So, Olga needs fresh supplies of plasters such as URGOTUL and MEPILEX urgently. We are reaching out to those kind people who would like to help Olga in her fight against pain and torment. All donations, regardless of amount are put to good use and are greatly appreciated.

To help through a donation you can use:

Paypal: svemdo@gmail.com
Reference: Needslist.com for Olga Khopta

You can also help by providing the supplies needed, please contact us for a list of the appropriate products.

Igor Krutous

Igor for 4 parcels with Mepilex 20×20, Mepitel 10×18, Mepilex Transfer 15x20and 20×50,Peha Crepp, Macrogol Hexal, Mirfulan, Zink Beta, Panthenol Hexal and Fresubin.

Igor with his parcel.

Igor got his help

Igor got 2 more parcels with medicaments and wound dressings

Igor received Octenisept( antiseptic), Macrogol Hexal, Medigel, Fresubin, Zinksalbe

Olga Khopta

To help Olga through a donation you can use:

Paypal svemdo@gmail.com
Reference Needslist Olga Khopta

You can also help by providing the supplies needed, please contact us for a list of the appropriate products.

Olga got the parcel with Mepilex Lite 20×50. All supplied through donated money.

Olga got her “second skin” Mepilex Lite 20 x50. All supplied through donated money.

Olga with the supplies Mepilex Lite 20 x50. Supplied through donated money.

Olga with Mepilex Lite 20×50 and Urgotül 15×20. All supplied through donated money.

Olga got two parcels with the supplies: Urgotül 15×20 and Mepilex Lite 20×50. All supplied through donated money.

Olga got Mepilex Transfer 20×50 and Urgotül 15×20. All supplied through donated money.

Pavel Vesku

Pavel Vesku received Mepilex Transfer 20×50 and Mepilex Lite 20×50.

Vlada Kirilishina update 04 Aug 2019

08.10.2018. Vlada got Octenisept gel, Mirfulan wounds healing cream, Prontosan gel, Ceterizin and Nurofen. All supplied through donated money.

19.10.2018. Vlada got a big parcel with the supplies: Mepilex Lite 20×50, Mepilex Transfer 20×50. All supplied through donated money.

Vlada Kirilishina received: Prontosan Antiseptic 2 l; Wound´s gels: Prontosan, Medigel, Octenisept. All supplied through donated money.

Vlada with Mepilex Transfer. All supplied through donated money.

Vlada received Sudocream. Supplied through donated money.

19.02.2019. Vlada received Mepilex Lite 20×50, Mepitel 20×32, Stülpa by Paul Hartmann. All supplied through donated money.

Vlada recieved Optifibre, Prontosan Gel, Zinkorotat, Octenidol. All supplied through donated money.

Vlada Kirilishina

Vlada Kirilishina from the Kmelnitskyi region in the Ukraine is a little 5 year old girl born with the condition Epidermolysis Bullosa. The children born with this condition are also known as “butterfly kids” because the condition causes the skin to become severely damaged (blister or disintegrate) at the slightest touch, making the skin so fragile just like butterfly wings.EB has no cure and medical research is slow as the condition is extremely rare. Butterfly kids live a short life full of pain where the care of their wounds is paramount. The constant supply of plasters and gauges the like used for the treatment of 3rd degree burns, is an absolute necessity. These plasters together with creams sooth the pain and protect their damaged skin.Due to the costly nature of the plasters, The Ukrainern State Health system send Vlada only the equivalent of 4 months supply. The supplies for the other 8 months is down to Vlada’s family and generous donors who we are calling upon here, to support Vlada’s cause.Vlada is pictured here on a good day with only minor wounds on her face with the arms and fingers bandaged as usual, to protect the skin against damage due to the normal movements that we take for granted.The bandages need to be changed daily to maintain hygiene and protect/heal the wounds on Vlada’s little body correctly. The costs for the bandages quickly goes over €2,000 Euro a month as the suppliers enjoy high revenues for these plasters to burn clinics and make no exception for the Butterfly kids.Vlada has daily needs to protect and heal her damaged skin, which include: plasters: Mepilex Transfer, Mepilex Lite, Mepitel (protecting, second skin);special elastic bandages: Tubifast green, Tubifast blue, Peha crepp, Peha haft;Healing creams and gels: Octenisept gel, Prontosan gel, Mirfulan, Medigel, Bepanthen;antiseptics: Octenisept, Prontosan;other: Movicol (laxative), Zyrtec ( antihistamine), Octenidol (mouth wounds healing), Multibionta drops( vitamins suitable for EB kids) Other European states health systems supply the kids with their yearly needs on these expensive plasters but unfortunately not in the Ukraine.
Everybody has experienced the pain involved with even a minor burn, imagine what it is like to have them all the time on up to 50% of your body, both on the skin and on internal organs which can also be effected in very serious cases. So again, the constant supply of the crucial pain relieving plasters Vlada needs daily, can only be guaranteed with the help of generous donors like you the reader, who decide not to let children like Vlada live a life of pain.

update: https://needslist.com/vlada-kirilishina/update-04-aug-2019/